Wednesday, December 26, 2012
NSGCCE Website Relaunch
Today our website has been re-launched and is a vast improvement on the old. Over recent months it became harder and harder to maintain and the only way around this was to start again. Some things have gone and others improved. We hope that you like the changes. Please let us know what you think. All the emails and web addresses still work so you can just carry on as normal. Amanda is still on Twitter so you still have direct contact with us and, through us, to the professionals. Our thanks to everyone involved, especially to Amanda for guiding the project, Chin Ling for doing all the conversion work and to the University of Nottingham for all the help and assistance they provided.
Now that we have a new home for our website, some of the links in the blog may not work. I am going through each entry as quickley as I can, newest to oldest, to find the broken links but this takes time. If there is information that you need now and it is behind a broken link then please let me know at email@example.com and I will jump it up the list.
Edited on: Wednesday, December 26, 2012 5:31 PM
Topic(s): NSGCCE, Posts from Colin, Site Improvements
Wednesday, May 09, 2012
A new mother’s eczema
I have had eczema since being a baby in the usual places, creases in the arms and legs and face but from what I can personally remember it was bad at the age of 8 years old and awful to live with at the age of 13 years old.
Like any average teenage girl I would love to wear makeup and nice scented cosmetics but the reactions I had were awful. I felt very outcast from the other girls as image seemed to mean a lot. If I bathed in the wrong bubble bath or used the wrong scent I would end up so scaly and swollen I felt embarrassed to go out.
The prescribed creams seemed to help but then I would try to hide it with makeup and the battle would start again.
The eczema seemed to calm down for a few years in my 20's but came back full force when i fell pregnant with my first child. I found that with the hotter months my skin would blister and swell then in the colder winter months would dry, crack and itch. I got in touch with my local GP who sent me for allergy testing at the Hospital. The tests showed I was allergic to Nickel and Perfume (nothing new there). I was told I have Atopic Eczema and there is no cure, so now I try to manage it through 2 creams split between the seasons. Eumovate Cream for summer/ fair season and Fucibet Cream through the winter/cold period. I still have to wear non latex gloves while taking a shower or bath or bathing the children and also when doing the dishes as too much water makes my eczema worse. I dread trying new detergents, perfumes, creams or make up colours and definitely can't wear lipstick at all. If I do I have a 4 day period were my lips are red and swollen.
My skin condition is never going to go away and still to this day my skin is reacting to new scents and chemical's I touch. Just in September I tried an eye drop as my hay fever was bad and I had a severe outbreak as it contained Hydrochloride, something I am now allergic to (recently found out).
My eczema is manageable but difficult and wearing. It's no major illness but still matters.
I hope my story might help some people and give me some hope for the future.
firstname.lastname@example.org Jane Long
Tuesday, May 01, 2012
Charities, Jeans & Showers: The Good, Bad and the Ugly
Here I describe a few of my wintertime eczema experiences. I hope it helps you in some way :-)
I suffer with eczema. I suffer with it even more when the weather changes from hot to cold or vice versa. Firstly my face starts to get really dry and cracked and especially around my mouth. Most annoying. Next is my arms which get blotchy and finally the backs of my legs get similarly red and cracked. These are things which I am sure are familiar to many of my fellow eczema friends out there... I've tried many lotions and potions to combat this but with no avail. For the past two winters however I have found the answer to eczema on the face at least! The answer being - The Mark Gorry Foundation. This is a Testicular Cancer charity I work for and since the passing of a close friend 2 years I have been involved in "Grow A Beard For Gorry" which as you can see from the picture above involves well; growing a beard! For the months I have it my skin is amazing and it also helps keep me warm!! Now beards aren't for everyone, but what better excuse to give it a bash than growing one and raising some cash at the same time (women can possibly try a sponsored leg hair grow?!). Good excuse too if like me you have a partner who doesn't like you with facial hair normally :-)
They was the good.
The Bad: Jeans are EVIL. This is just a recent discovery and there is a logic behind my outlandish claims...
For years I have suffered with really bad chapped hands with really dry skin and many trips to the doctor later I was still left with no answer and many creams to try. I like to keep my use of Steroid cream to a minimum if I can help it so I tried to think of the source of my dry skin as it was always worse on my fight hand. Surely not a coincidence! Turns it out wasn't. The story goes that my skin was particularly bad one morning and as I went to answer my phone (located in my right jeans pocket) I ended up scraping the top layer of skin from my knuckles... And then i realised! Clearly me dipping in and out of my pocket some 5-10 times an hour was rubbing my skin just like I was scratching! So obvious but I had never thought of it before!
My message to you? There's always reason why your eczema is bad... Either your scratching and so it's obvious or like me it's something so simple you don't even notice!
And Finally: The Ugly!
These things often do more harm than good especially in the winter months when the cold and wind is battering your skin leading it to be dry. A long warm shower is tempting to wash away the winter blues but for me it leads to more issues. A shower (more so the hotter you have your shower) drys out your skin. It does this because it removes the top layer of moisture (so the dermatologist tells me) from your skin. Clearly this isn't what you need with the additional consequences of the winter months. This year i will be sticking to having baths and I may dig out my trusted scarf and gloves for further protection.
Topic(s): NSGCCE, Posts from Andrew, Stories
Sunday, September 11, 2011
A Tale of Two Claims.
This week marks the end of a fight with the Department for Work and Pensions, nee Benefits Agency. I wish I could say the war was done, but still we fight the DWP's decision regarding our daughter's care needs.
Her tribunal is in the next week...
Last year, on-top of my IBS and ME/CFS, I developed a rather nasty case of pompholyx - "hand eczema". I didn't know it was eczema at the time - a small cut got infected, and my hands started blistering. This prevents me from cooking or washing, and can sometimes make walking even harder (I also get it on my feet). It doesn't go away; I've had only around two periods of less than a week where I had no blistering or weeping in the last year. This put even more strain on my gorgeous partner and carer, Twitter's @dombed. We were filing a claim for DLA for our daughter (whole other story!) when we noticed that I also qualify. So I applied in September 2010 believing I should receive the Lower Rate Care component.
Having read other peoples' experiences and advice on the internet, I didn't expect it to go smoothly, and sure-enough, it didn't. At this time I was still undiagnosed, and my GP believed it to be contact dermatitis. He also wasn't fully aware of the severity, as I'd been attending the Nurse Practitioner owing to her increased accessibility, so his report wasn't particularly supportive. I, of course, requested a reconsideration and the DWP duly dispatched an ATOS Origin Dr to my house to investigate my claim. He came along, was quite pleasant & thorough, did his report and left. I didn't think there was any way that the reconsideration could go anything but my way after he'd seen my hands.
But again, things didn't go smoothly. The DWP simply ignored chunks of his report. He said my hands suffered "substantial impairment" in the report, but the DWP decision stated I suffered "slight impairment". He said I can't cook. The DWP said I can. I got confirmation of a pompholyx diagnosis, but the DWP didn't care. Off to tribunal went the case, then.
This was when the DWP decided now would be a good time to make life that bit more stressful, and perform a migration on my claim from Incapacity Benefit to Employment & Support Allowance (ESA). Great timing, DWP!
They didn't even make this simple; scheduling problems resulting in ATOS making threats of benefit cuts while the DWP tried to help find a workaround for us.
My ESA Work Capability Assessment went well. The GP seemed to understand my problems, and it went pretty smoothly for me.
Not-so-smoothly for the poor elderly lady sat in an empty waiting-room, while the staff were on lunch, having been sat there for 3hrs after being told to wait.
I hate waiting, so phoned the DWP to get the result of my ESA migration. I was told that I'd been placed in the Support Group, which I think made the call-handler confused when I then asked for a copy of the ATOS report. I planned on submitting it to the DLA tribunal.
Wednesday came, and off to Norwich we went for my Tribunal hearing.
Clerks were great - friendly and informative. The actual tribunal didn't seem to go very well.
It was held in an office-room, with a table separating the two chairs for the appelant from the three chairs of the Tribunal members. It was much closer quarters than I had expected. A male consultant surgeon to my left provided the medical advice; he was pleasant, understanding and helped cut through some confusion from the Chair. To the right was a Disabilities Advisor, who was there to provide life-impact advise to the Chair. She was also pleasant, but very quiet. She hardly said anything. The Chair herself was quite stand-offish and slightly intimidating. I felt like I was probably wasting her time.
The surgeon asked questions, then the advisor did, followed by the Chair who then said they'd decide that day and write with the decision.
I really hate waiting. When you're sick and/or disabled, you often have a lot of time on your hands with little or nothing that you can do.
This makes you think about things more than you would otherwise. Being told to wait for the post is like being sentenced to up to a week of stressing.
So Friday morning I rung the Tribunal Service, hoping they'd tell me what the result was. Turns out they're not allowed, so I tried the DWP. A nice lady at their call-centre said that the system only stated "appeal allowed" and didn't know what that meant. She said they'd sent me a form, but would ask me the questions and send an email to the department to hurry things up. She then asked if my bank details were correct, and if I'd been in hospital overnight since the appeal.
The post came - a brown DWP-ish envelope, creating hope that it was the decision. It wasn't. It was that ESA ATOS report. Only two days too late to be useful.
Did I mention I very much hate waiting? Friday afternoon I tried again, figuring they may have updated their systems. I was right - another nice DWP call handler explained that I had won my appeal and was being granted a 3yr award of Lower Rate Care, starting last year!
Irony upon ironies, while sorting the notes for this, the postman came.
With a Tribunals decision notice. Did you know that the Tribunal Service has no enforcement power..? Meaning the DWP can just ignore them if they really wanted?
So this case, which really wasn't that complicated because it only takes one look at my hands to realise the difficulties I face, took over a year to come to it's conclusion, and only did so correctly because my partner and I were willing to fight. I've no idea how much extra money this all cost, the lawyers, the decision makers, the Tribunal staff, but it shouldn't have cost it. I do know how much stress it's caused to myself, my partner, our family, but it shouldn't really have cost it either.
But this fight is done. For now.
Topic(s): NSGCCE, Posts from Craig, Twitter
Sunday, August 07, 2011
New Allergy Information Leaflet SeriesWe are pleased to announce that we have another new service for you to get to grips with. Nottingham Children’s Hospital have produced a series of eight great information leaflets that deal exclusively with allergies. These leaflets compliment our own Patient Information Leaflets very well. To get access to them right now, go to the Allergy Information Leaflet page and download them today.
Topic(s): NSGCCE, Patient Information Leaflets (PIL's), Posts from Colin, Site Improvements
Tuesday, June 07, 2011
Welcome to a New Team Member
We have a new member on the team. Priya Mulji is a social network addict and has agreed to look after our latest site enhancement which is a presence on Facebook. If you have something you want to say then say it! You have so many ways to be heard now, don't hold back! We have a route for everyone, Email, Twitter, Blog or Facebook. You choose.
Topic(s): Facebook, NSGCCE, Posts from Colin
NSGCCE follower raises funds for National Eczema Society
One of our twitter
followers has walked 630 miles to raise money for the National
Eczema Society. On Good Friday, 22nd
April 2011, a team of intrepid walkers led by Stephen and Roddy
Jenkins, set out from the West Somerset resort of Minehead, on a
walk skirting the South West coast. The team is undertaking the walk
in an effort to raise a massive £10,000 for the National Eczema
Society and help them to facilitate and support research into this
Over the last goodness knows how many months, Roddy (@RoddyJenkins) has been tweeting a lot with our own Amanda Roberts (@eczemasupport) about this feat of endurance. Roddy Jenkins has suffered all his life from chronic eczema (“boiling of the skin”) which, for him, has meant skin breakdown, immune system complications, a variety of allergies and much suffering along the way. Roddy is also partially sighted.
Stephen (Roddy’s father) and Roddy completed this eppic march on 31 May 2001 after 40 days and averaging about 16 miles a day. If you would like to help Stephen and Roddy by donating, you can do this from Roddy's fundraising page at http://www.justgiving.com/Roddy-Jenkins. They are over half way to the £10,000 target. Every pound raised will help to fund much needed research. We wish them both all the very best in this huge challenge. To review their progress reports and itinerary just go to the National Eczema Society's website.
Topic(s): Fundraising, National Eczema Society, NSGCCE, Posts from Colin
Sandra Lawton wins Prestigious University Award
Sandra Lawton has won a ‘Recent Graduate’ award from the
University of Nottingham. Sandra was presented with the award at
the 2011 Alumni Laureate Awards at the East Midlands Conference
Centre on Saturday 7 May by the Vice Chancellor for Nottingham
Trent University, Professor David Greenaway.
Topic(s): Awards, NSGCCE, Posts from Colin
Eczema Treatments Priority Setting Partnership
If you, or someone close to you, are one of the almost 6 million eczema sufferers in the UK you know first hand the challenges associated with living with this unpredictable, painful and incurable condition.
Exacerbated by a lack of research into available and effective treatments, one of the most frustrating aspects of eczema remains the process of trial and error required to design and implement an effective treatment regime to both strengthen the skin barrier and manage the inflammation, redness and incessant itch.
As part of its commitment to improving patient care in the UK, the National Eczema Society is therefore calling on sufferers across the country to draw on their own experience of eczema this summer to help shape future treatment research. The Eczema Treatment Prioritisation Exercise is being run by the highly regarded University of Nottingham and the James Lind Alliance. By means of a two part survey, the objective is to identify questions that patients, carers and health professionals think are important about eczema treatments which have not yet been researched and then to establish which of those questions need to be answered as a priority.
Respondents are initially asked to submit up to five questions that they would like answering on the treatment of eczema. These results will then be collated and respondents invited to rank the most frequently asked questions in order of importance to them. The top ten questions, as identified and ranked by respondents, will subsequently be developed into research proposals.
Chief Executive of the National Eczema Society, Margaret Cox, feels this is a crucial step forward in addressing the issue of eczema in the UK. “With the such a huge number of eczema sufferers in the UK, the need for greater understanding of existing treatments and how best to employ them is vital to the successful management of what can be a lifelong condition. There remains a significant lack of evidence in this field and we aim to help address the issue this summer with the support of both patients and their carers. By putting the patient at the heart of the research process and identifying which questions are of most importance to them we can help to ensure that precious research funding is directed towards providing the answers that would have the most impact on both sufferers and those who care for them.”
If you would like to be involved in shaping the future of eczema research you can either complete the short survey online at http://www.homeforeczema.org/ or, if you do not have internet access, you can request a paper version from the National Eczema Society's helpline on 0800 089 1122. The survey will be available to complete until the end of July with the results of the project due to be published in Spring 2012. This is a major oportunity to have your say and to influence the decision makers over which research projects they undertake. The results of this exercise will determine current uncertainties in the treatment of eczema and the information gained will be used to guide the design of future eczema research projects and research funding opportunities.
Please, if you can, complete the survey. It is so important and will affect which research projects are undertaken over the coming years. If you would like to take part in this exercise, please click the panel on the home page of the H.O.M.E website that asks "Do you have unanswered questions about the treatment of eczema?" Your time will count for a lot. Thank you.
Topic(s): Current Research, Current Trials, National Eczema Society, NSGCCE, Posts from Colin
Monday, April 11, 2011
A sad poem about Allergies and Eczema
This is a very sad poem that I wrote in 2008 when my skin and allergies were particularly raw. I am happy to report my skin is so much better but I thought it might sound familiar to some of you.
Just stop scratching By Ruth HolroydThe itch is consuming
It takes over my brain
My skin I am tearing
The relief is the pain
Thickened and swollen
Red and sore
Constant skin crawling
I can’t take any more
My eyes are all puffy
My skin is inflamed
All red and angry
I feel so ashamed
I scratch and I scratch
I scratch all day long
The irritation is relentless
And I know that it’s wrong
My nails I cut short
So I use other things
Tweezers, combs, my brush
Clothing and rings
It prickles and tickles
All day and all night
I try all solutions
But no help is in sight
Elimination diets, sun bed treatments
Chinese remedies, herbal potions
Steroids, creams, ointments,
old wives tails and random notions
“Stop scratching” they say
“If only you would try”
“Oh thank you so much”
I feel like I could cry…
It just isn’t that simple
When your skin is so dry
Lumps keep rising, oozing,
Livid, heated. Oh so weary.
I dream of soft skin
Velvet smooth and silky
Of waking in comfort
A shiny new perfect me
Topic(s): NSGCCE, Poetry, Posts from Ruth
Tuesday, February 15, 2011
Results of the Softened Water Eczema Trial (SWET) are now available
The results of the Softened Water Eczema Trial have now been released and are available on line. This trial has been going now for four years so well done to all those involved and whose time and effort directly affect the ongoing well being of eczema sufferers. To each of you a massive Thank You.
Topic(s): Current Research, Current Trials, NSGCCE, Posts from Colin
Friday, February 11, 2011
New Patient Information Leaflet (PIL) now Available
The latest PIL is now available for download. It is called Scalp Eczema and is available on the Patient Information Leaflets page and deals with issues of the head and answers some of the more common questions that people ask.
Topic(s): NSGCCE, Patient Information Leaflets (PIL's), Posts from Sandra
Friday, December 31, 2010
Ciclosporin has improved my eczema quite considerably
Please allow me to introduce myself. My name is Huw, I’m 42 years old, and I work in primary healthcare. I’ve suffered from eczema for as long as I can remember, and spent several months in hospital, several times, because of it when I was younger.
Around eighteen months ago, I went to my GP to ask if my treatment could be reviewed. At that time I was using Betnovate cream for “affected areas” and aqueous cream as a moisturiser. I didn’t (and still don’t) use any specialised scalp preparations as I tend to keep my hair very short so can use my normal creams on my head. I was becoming slightly concerned about the side effects of long-term potent steroid use, and asked if there were any alternatives.
My GP, who is very pleasant, approachable and, I thought, knew what he was talking about told me that there was “nothing new under the sun” in the field of eczema treatment, and suggested I try downgrading to Betnovate RD (which is diluted to a quarter of the potency of straight Betnovate) if I was concerned about topical steroid use, to see how it went. So I did. My treatment now comprised Betnovate RD and aqueous cream, together with antihistamines that I’d buy as and when I needed them.
A few months later, after a prolonged period of poorly controlled eczema, I again went back to my GP. This time, I saw a different GP who I hadn’t seen before (and will never consult again). I asked her for a referral to a dermatologist, and when she asked me why I wanted one I told her that I hadn’t seen a dermatologist for over 20 years, and as my condition was a specialist one I’d like to have my treatment reviewed by a specialist. Her response was to tell me that my eczema wasn’t severe enough to be referred, and to continue with my treatment of Betnovate RD and aqueous cream.
I’ve never been one for an argument, so accepted her opinion and went away, even if I wasn’t happy with the outcome. Over the next week or so I talked to some medico friends and did some research, then went back to see GP number three, who had retired from the practise but still came back to help out when they were short. I asked him for a referral, explained my reasons (same as before) and he immediately agreed and arranged for me to use Choose and Book. I chose, and booked.
The next morning, while I was still asleep (I work shifts and my sleep patterns are somewhat erratic) I had a phone call from GP number 2, (the “your eczema isn’t bad enough for a referral” one) querying my reasons for coming back and asking for a referral again. In my sleep-fuddled state I simply agreed when she asked if it had got worse since she saw me. Afterwards, I wished I’d told her the real reason: that I wasn’t happy with her opinion or the way she’d spoken to me, and had gone back to see someone else and if necessary insist on a referral.
Cut to a few weeks later, and I’m at my first appointment with the dermatologist. “Typical,” I think to myself as I sit in the waiting room “I finally get to see a specialist and my skin’s better than it’s been for years. I bet they laugh me out of the clinic.” In anticipation of this, I had compiled a file of photographs of my eczema when it was bad, together with a document entitled “Why do I want to see a Dermatologist?” which listed about 15 reasons, collected over the preceding few weeks.
My name was called, and I walked in to the consulting room, sporting my near-perfect skin and dreading the derision with which I was sure to be met.
“Wow,” said the dermatologist, “that’s really extensive eczema.” I collapsed into a relieved heap on the chair next to her desk.
After a comprehensive consultation, the dermatologist suggested I try a treatment called Ciclosporin. She explained that it was a immune system suppressant, and I seem to remember her telling me that it had only been used for eczema treatment for a few years (after the theory/discovery that eczema is caused by an overactive immune system). She told me that it could have adverse side effects (high blood pressure and kidney problems), but that I would be closely monitored before and after I started using it, if I chose to try it, to make sure any ill effects were picked up quickly. I was given a sheaf of information about the treatment so that I could make an informed choice, together with another appointment at the clinic, a couple of weeks later, to see the nurse specialist.
I read, I researched, I decided. I saw the nurse specialist, was measured, weighed, sphygmomanometised and had bloods taken. I returned for my third appointment where I had a final check over by the dermatologist to confirm my suitability, then started on the treatment.
My initial dose was to be 250mg per day, split into 100mg in the morning and 150mg in the evening. I carefully read the patient information booklet that came with the Ciclosporin (which was lucky, because I had been taking St John’s Wort for some months beforehand and discovered that I had to stop it when I started the new treatment). Another common drug that can’t be taken with Ciclosporin is Ibuprofen, and I’ve also been advised to avoid sushi (not a big deal for me) and blue cheese (something of a bigger deal) due to the increased risk of listeria caused by suppressing my immune system I haven’t tested the issue, as much as I miss my Stilton.
Another thing I was warned about was the increased risk of infections, especially chest infections, for the same reason. I was told to see my GP (guess which GP I wouldn’t be consulting?) as soon as I started to feel ill.
The patient information booklet told me that most people who take Ciclosporin benefit from it, and somewhere in the literature a timescale of two to three weeks was mentioned. The booklet warns to immediately see your doctor if you develop a sore throat, any infections or begin to feel generally unwell, then lists a string of possible side effects.
Over the first few weeks after I started the treatment, my skin steadily improved until I was 95% clear of eczema, with no topical steroid use. The biggest differences I saw were on my face, scalp and forearms: my face no longer had its untreatable dry patches (they had always seemed to instantly absorb cream and return to flakiness in about 30 seconds flat), likewise my scalp (I suddenly found myself able to wear dark t-shirts for the first time) and my forearms stopped developing spontaneous and unrelievable maddeningly itchy patches that would end up as purpuric bruises after I scratched them.
My blood pressure was up, however, at about 145/98, and I had occasional bouts of suddenly feeling really ill: nauseous, abdominal cramps, just ill. I have had only four or five of these ‘attacks’ over the last seven months, and they have passed after at most an hour or two. I also had a couple of skin infections, and became quite closely acquainted with Flucloxacillin, which was prescribed by walk-in centre GPs (on both occasions at about 3am – one of the benefits of working shifts is not having to queue!). On two or three mornings I woke up with a hangover-like headache, without the more usual cause!
I discussed these issues with the nurse specialist on my first review consultation at the dermatology clinic. After referring to a dermatologist, my dose of Ciclosporin was reduced from 250mg/day to 200mg/day, and I was given Dermol, which is a moisturiser with antimicrobial properties to reduce skin infections. I was also given Dermol lotion to use as a soap/shower gel substitute. I was also referred to my GP to consider treatment for my raised blood pressure, but the GP (one of the good ones) didn’t seem particularly concerned at the levels I had reached, describing them as “not in the treatable range”, and when it was checked at the surgery it was a more respectable 120/80.
I continued on the 200mg/day until my next appointment (probably four months into the treatment). My bouts of feeling ill had stopped, but my eczema had deteriorated. It was still much better than it was before I started on the Ciclosporin (face and arms still clear), but my legs and torso were becoming sore and red again. I had had a couple more skin infections, and one episode of what I’m pretty sure was cellulitis on my ankle, which resulted in an early finish to a night shift and a visit to A&E, where the doctor agreed with my provisional diagnosis and prescribed Fucibet cream and, you guessed it, Flucloxacillin.
I had still not suffered any chest infections (touch wood), and my blood results were still coming back OK – no nasties appearing and no indication that my kidneys or liver were suffering any ill effects from the medication, so my dose was increased to 300mg/day (150mg BD).
This brings me up to now. I haven’t had any headaches for months, my skin’s still much better than it was before I started Ciclosporin, but it’s not perfect. I still get the occasional attack of nausea and abdominal cramps (most notably on Christmas day, making me miss my dinner!) but they still pass after an hour or two curled up in bed. I still haven’t had any chest infections, but seem to have a constant niggling skin infection, usually on my lower legs. I think the Dermol is keeping that under control, if not getting rid of it completely. I’m using about 10% as much topical steroid as I did pre-Ciclosporin. I’m not yet at the maximum dose of Ciclosporin for my weight, and my next appointment at the clinic is scheduled for the 1st March 2011. I’ve got a couple more blood tests between now and then.
My conclusion? Ciclosporin has improved my eczema quite considerably. It’s not a magic bullet, and my skin’s still far from perfect, but it’s a lot better than it was before the treatment. I think the side effects I have experienced are a relatively small price to pay for the improvement to my skin, but my wife doesn’t share my opinion. She doesn’t like me being on the Ciclosporin (ever read the list of possible side effects? Then again, ever read the list of possible side effects for virtually every medicine going?), but then she doesn’t know how my skin felt before I was on it, and how distressing it could be. It’s still an ongoing process, and it remains to be seen how things work out in the longer term, but I hope I can carry on with it.
My advice for anyone who’s had their eczema treated by no-one but their GP for a few years? Ask for a referral to a dermatologist, and don’t take no for an answer. You have a specialised condition that needs to be assessed and treated by a specialist, and you’re entitled to that treatment.
Topic(s): NSGCCE, Posts from Huw, Referral Issues, Stories
Saturday, December 18, 2010
The teenage girls guide to looking beautiful
Ok, so I was about 14 when my eczema got really bad. Mother was in a frenzy. Nobody knew what to do and everyone was stressed out because I was stressed out. My poor family. GCSE’s were approaching so that added extra stress. In all those moments I just wanted someone to hold me and give me a tight hug and say you are beautiful. Don’t worry. Don’t stress. Relax and stay beautiful.
So as a sufferer and survivor I’m going to share with you some tips to look great even though you might not feel like getting out of bed. I guarantee you will feel wonderful and you will leave that house with a smile on your face, a swagger in your walk and looking a million dollars!
Imagine it is a lovely sunny Saturday morning, no school = no stress. Yes so you have woken up scratching and itching. It’s hard to ignore, I know, I have been through the worst of the worse but believe me but it does get better. Let’s imagine it’s not there though.
First thing I want you to do is go to a window open it and take a deep breath inwards. Close your eyes and imagine you are far, far away. On a warm beach, the breeze in your hair and palm trees surrounding you. Sometimes things are easier said than done but just for a few minutes imagine that you don’t have eczema, that your skin is soft and beautiful. Now open your eyes. Everyone who knows you see’s beyond the eczema and don’t know you as Priya the girl with eczema’ they know you as ‘Priya the funny, smart, gorgeous, free willed girl’.
So I am 28 now and when I was growing up, mainly around the ages of 14 and 16, I suffered from really bad eczema in the worst place possible. On my face. Now, we know the drill. Itchy, flaky and sore skin. If I can get over it so can you. And you will honey. But I know how hard it is. Therefore what I am going to do is share a few of my favourite stress and eczema busting tips. For parents and carers these are great to introduce into the sufferers lives. You’re doing a great job!
First and most important is do not stress. Stress always made my skin flare up really badly. When you are a teenager I know it’s hard. Gcse’s, wondering whether that boy likes you or not, wondering what to do for your career, whether you want to do A levels or get a job, go travelling, parents or siblings giving you trouble. You just want to crawl into bed and scratch until you fall asleep. But you know as well as I do that you don’t want to wake up with those flakes of skin in your bed and tiny blood stains on your duvet do you?
So what you need to do is take a few steps to make sure you aren’t too stressed.
Firstly, speak to teachers and explain your situation. Your parents are probably aware of what you are going through but still do sit down with them and explain to them what you are feeling inside. Chances are your mum will just give you a big hug and tell you everything will be ok.
Now once the chats have been sorted out here are a few de stressing techniques. One is taking a nice, long bath (obviously , if it suits your skin, add some oil in the bath so that you are moisturised and then you’ll also smell lush!). Get regular exercise. For some people the sweat can aggravate the eczema but I think it varies for everyone. I find this exercising a great stress busting techniques. So go for a walk or run, take the dog for a walk or dance around your house to your favourite song. Anything that gets your heart rate up is fabulous! Make sure you wear loose clothing when exercising. What I would really recommend is yoga or Pilates. It doesn’t make you sweat a lot. It relaxes you, plus you will be building your core strength so why not give it a go?
Massaging also helped me so why not ask someone you trust to use your moisturiser and give you a massage in the affected areas or go and see a masseuse who uses only natural products. It will de-stress you completely and leave you feeling rejuvenated.
Along with exercise eat well. Many people say dairy or wheat products are not good for eczema and I am no expert but I would say staying off those two did help. So make sure you eat a lot of fruit and vegetables, drink a lot of water to wash away all of those toxins.(although please do indulge in the occasional cupcake as they are oh so yummy)
Doctors and experts alike will tell you to keep away from makeup. But when you are 16 it is probably easier said than done so what I’d say is keep it light.
If you have eczema of your face it is probably not advised but I’d say is a coat of mascara will not hurt on a daily basis. For a party a light foundation dabbed on where it’s needed most, a mousse based blusher, a coat of eye liner, a dash of eye shadow and a coat of mascara will do wonder. But I stress do not use this everyday as this will clog up your pores and will not be good for eczema. I consulted some professional makeup artists all they all unanimously concurred that don’t use perfumed products. Keep it all natural and organic, sleep lots and no stress
The main thing is enjoy yourself. You are young, you are free, beautiful and this is the time to enjoy yourself. Don’t worry about what people see or think. People will always do that no matter who you are. So go out have fun, dance, sing...be you.
Topic(s): NSGCCE, Posts from Priya, Stories
Sunday, November 28, 2010
Eczema and Bullying
When I was in primary school I used to get bullied by people I called my ‘friends’. They weren’t but I was extremely naive and, like most other kids in primary school I wanted to be popular and liked by everyone. Little did I know that being ‘best’ friends with the ‘in’ crowd would make me one of the most hated. It all began in year 4 when I hit puberty, started putting a bit of weight on, getting a few spots. No one else in my year had started developing these mysteries, as I was an early starter.
In the past years I had had an amazing best friend, who I had some brilliant times with, but I suddenly wanted a change, and I wanted to be pretty and popular and have boyfriends. The only way of reaching this would be to make friends with the superior group and have to suffer pain along the way. It wasn’t the obvious bulling you would think of when first hearing that word, but it was mental bulling. Making me feel unhappy about the way I looked, undermining me and you could say treating me like a slave, forcing me to fetch everything they wanted. And I would, I would bow down to their every need.
In our ‘gang’ there were 5 and the teachers always asked for the groups to be a maximum of 4, and of course I was always left out. But yes you probably guessed it, I went back to them every time. They would call me fat, and ugly and spotty. Force me to say nasty things to people, force me to not be friends with anyone else but them and then argue with me on purpose and get everyone against me.
I used to go home crying every night to my mom, and she would say the same thing “You had a nice friend! But you threw her away and now you’re paying the price!” She never understood my hurt and how bad they actually deteriorated me. I felt I couldn’t talk to anyone. I came so close to suicide but my sister caught me and talked me out of it.
When I reached year five, they started to grow out of this bullying phase a bit, but then they started at it again when I tried to make new friends. Things carried on like this for a while, and then in year six we had a new teacher start and she was lovely. She found my crying in the toilets one lunch time, and from then on I went to her for advice, she couldn’t stop it because she didn’t have any authority over them. But she was there for me, and helped me. She was my cover for lunch times and breaks and she also taught me to stick up for myself, and just simply say the one strong word “NO.”
All through this heart ache and pain, I had eczema and it had never gone away, when I reached year five it had gotten worse, it was always pussing and weeping. That all changed when I moved to high school. I met nice people and formed and lovely group of friends! I’ve never kept in touch with the bullies from primary, there are only two people from that wretched school i am still friends with now, and they were the two best friends I had, that were always there for me. (They weren’t popular, or had boyfriends but they must be the two nicest people i have ever known!) All I’m trying to say is don’t let people treat you badly, you don’t deserve to be bullied or hit. They’re not your friends if they treat you badly. And if no one at home wants to listen to your worries then you must find someone that will.
It helps so much to get it all off your chest and have someone tell you it will be ok, because it will. You just need to stand up for yourself and say no.
Topic(s): NSGCCE, Posts from Olivia, Stories
Thursday, November 18, 2010
You are amazing and you are beautiful …
I have always suffered from mild Eczema on my arms. When I was about 14 it became uncontrollable. It was really distressing experience, very painful and traumatic. There were days I would not want to just hide, not get out of bed and bury myself from the world. 3 showers a day to stop the dryness were normal for the worst part of it. I still can’t leave the house without showering in the morning even if it’s just to go to the gym and I am now 28.
Those years are probably to blame for the confidence issues I still face today. The tough and rough exterior you see today is just a mask at times, however happy and smiley you may feel.
Hormones kick in and you are starting to fancy boys. Imagine when you are aged between14-17 and have no boys taking any interest in you, no one asks you out to the school or disco and your hormones are running around like crazy psychopaths. The last thing you want to think about is the itching, irritating, atrocious ugliness that covers your face, arms, neck, scalp and backs of your legs. Everything that was visible. I automatically became ‘one of the lads’ – the agony aunt, best friend type, who you could go to if you had a problem.
Being an ugly duckling and being pretty quirky it was a major knock to your self confidence at times being ignored by boys and not having a first kiss in your teens. Imagine you’re 15, there’s this boy or girl you like, you get so nervous around him or her and imagine your skin is so dry and tight that you have to lather yourself in cream; 3, 4 maybe even 5 times a day. The itchy, flaky, sore skin that is a constant fret. It doesn’t make you feel young and vivacious but more dehydrated and thirsty. Moreover the friends you have are beautiful. This knock may set you up for how you will be in your later life. The stress from Gcse revision made it even more unbearable. I wasn’t ever pressured to do well but I was afraid of disappointing by parents so I tried my best and that anxiety made the eczema worse. I just wanted to lie in a steaming bath and soak away my skin. Imagine the temper tantrums teenagers throw combined with the distress of Eczema and Gcse pressure. If you are reading this I imagine you know how I felt at the time, especially having it on your face.
The condition comes and goes in phases today but not as badly as it used to be, I have been left with scars on my arms, legs, forehead. I guess due to Teenage hormones it spurred out of control at that point. My poor mother tried everything. Homeopathic medications, strong steroids. We discovered an African cream called Wa Wa cream and whatever was in it kept it in control up until about age 21-22. After that time it became a lot better and I am now able to keep it in control with Aveeno.
It was hard for me to talk about it at the time as I didn’t think anyone understood. 15 years ago I didn’t have the support that is available today. The scars are still physically there maybe even emotionally in a small way that have held me back. I think the older I become the better it gets and it just pushes to the back of my mind and I sometimes even forget it is there.
About a year ago I read a book called ‘The way things look to me’ by Roopa Farooki where the main character is autistic but her sister Lila suffers just like we have. Lila’s character in ‘The way things look to me’ just perfectly described the feelings and issues I have faced with my image in all those years up until now and the jealousy I feel towards some people with perfect skin. Even though now it is not so bad I still can’t have a shower and not have to lather and immerse my whole body with moisturiser afterwards – it’s not just a vanity thing, it’s a way of life. I do it for sanity and comfort! (Aveeno for extra dry, irritated skin is my fave)
We are just simply beautiful. If you read this and think you are alone in the scrubbing, peeling, flaking, weeping skin, not wanting to face the world and just staying in bed all day I don’t blame you. But you’re not alone. I was the same but you can’t let it affect you and you won’t. When I was recently sent the article about the 13 year old from Manchester who hung himself because he was being bullied about his eczema my heart just broke. The more you try and hide it the more damage it will cause to your insides and in turn the itching and scratching and weeping will just spiral until you just cant take it anymore and think about ending it as this little boy did. Just believe it will get better and it will get better. You are amazing and you are beautiful …not just on the inside but outside too.
Topic(s): NSGCCE, Posts from Priya, Stories
Wednesday, November 17, 2010
An Interesting Difference - Reactions to Illness
As you may be aware, I suffer from Chronic Fatigue Syndrome/ME and Irritable Bowel Syndrome. These are "invisible illnesses" - the symptoms aren't visible to you. I don't have a missing arm, I don't have lesions all over my face, and to look at me you'd probably think I'm just really hung-over.
I'd gotten used to people not seeing that I was ill, gotten used to the disbelief and outright rudeness from others, gotten used to having to explain my illnesses to people through either necessity, or in response to questions asked. It's a trust thing - if you can't see it, how do you know it's really there? There's that niggle (or with some people, a shout) in the back of the head that says "it may not be real, they might be after attention/benefits/whatever". I've seen it, heard it, dealt with it...
...that is until recently. Back in April a small cut in my right hand became infected. No biggy, see the doc, get some steroid cream and anti-biotics and that will clear right up, right? Wrong. The infection cleared up lovely - my skin did not. An itchy, horrendous, rash began to spread across the hand and up my fingers, at first sparing my fingertips. Then it started on my other hand, and also my feet. Now, when I say itchy, I'm not afraid to admit that I've suffered from a fungal infection or two in the past, I've fallen half-naked into a nettle-bush and once spent nearly 6months with my leg in plaster - I thought I knew what an extreme itch was. I knew nothing. This was an itch beyond all comprehension - an itch that literally made my hand numb for all sensation except for the itch. It blistered all over, it dried up, the skin cracked, then as it was starting to heal the blisters and itch would come back, starting it all over again.
As a result, my hands now often look like this despite being under consultant-dermatologist care, using antihistamines, steroid creams and gallons of moisturiser.
But something else showed up, something far more interesting - understanding, empathy, well-wishes, consideration. I'm not used to that, I'm used to being made to feel like I'm a shirker despite actually being really ill. People can see this. It frightens them. It makes them withdraw while inhaling sharply before saying "ow", or "that must really hurt". They empathise, considering how it must feel to have these hands. People open doors for me. People write for me (better than get blood and gunk on their pens I suppose)!
I've had to keep them covered for a while, can't touch things without the gloves, and they themselves cause their own set of reactions. Bear in mind that I generally wear dark colours - a black hat, black shirt and the only bit of colour on me is my blue jeans; but now I have bright white gloves completing my ensemble, a glaring contrast of white on black.
One little girl asked if I was a magician. I get constant references to Michael Jackson! A group of adults I overheard were saying "check him out in the hat and gloves!", "yeah, something SERIOUSLY wrong with him!". I had one 12yo girl snidely comment "ooo, nice gloves!", so I pulled it off, held up my hand and asked "is that better?". She literally screamed (not an exaggeration), backed off and pretty much begged me to put it on. Despite it reducing me to a figure of horror and revulsion, I must admit feeling a momentary victory over snotty-commentary with that and went off smiling.
So three reactions to three visibilities of illness. Invisible illness invites, maybe even causes, suspicion and derision, denial and confrontation, dismissal and depression. Visible illness elicits sympathy and understanding, empathy and compassion, revulsion and warm-wishes. Covered visible illness seems to call forth questions, inquiry and even open mockery.
Since April I've had more good-wishes, acceptance and plain-old understanding than I've had in all the years I've had CFS/ME or IBS. Now while I'm not seeking sympathy for my conditions, it's nice when people at least understand them or take them into consideration when dealing with the consequences of the symptoms (be it me being grumpy, or unreliable, or forgetful, or confused, or easily stressed).
One thing, seeing all three reactions to these three states of illness has been very eye-opening. It's shown just how people would react were my invisible illnesses visible. Not all of these reactions are good, but at least they're there. Even a negative reaction confirms acceptance that there is a condition present - something I'm simply not used to.
To contact Craig directly goto http://twitter.com/wokstation
Topic(s): NSGCCE, Posts from Craig, Stories
Wednesday, October 06, 2010
Audio PILs Now Available as mp3 Download
Patient Information Leaflet Audio Number 6 has now been released & we have now made all Audio PILs available as an MP3 file for downloading. This means that you can take them with you wherever you roam. Wether you listen on an mp3 player or an iPhone/iPod/iPad or even if you have printed out the pdf version, the information you need will be right there when you need it.
A.PIL1 discusses Allergy Tests for Atopic Eczema
A.PIL2 discusses Atopic Eczema and Infections
A.PIL3 discusses Atopic Eczema and Steroid Cream
A.PIL4 discusses Atopic Eczema Sun Holidays and Fun
A.PIL5 discusses Children Newly Diagnosed with Eczema
A.PIL6, discusses the effects of winter on eczema and provides 10 top tips for coping with eczema in winter.
Edited on: Wednesday, October 06, 2010 1:26 PM
Topic(s): NSGCCE, Patient Information Leaflets (PIL's), Posts from Colin
Thursday, September 16, 2010
Our youngest daughter, now four, contracted pneumonia when she was eight months old. My wife and three children were on holiday in Cornwall when she was taken ill. The condition worsened and developed into bronchiolitis, and she was taken into hospital where she was given antibiotics and placed on oxygen for four days and nights.
The care she received in hospital was of a very high standard and the staff were sensitive and supportive of my wife in this difficult situation (I was still 400 miles away for the first two days) and when they were discharged we spent the remainder of our extended holiday thankful that our little girl, nicknamed ‘minimonkey’, was alright.
It was several months before her eczema appeared. It began with a patch of dry skin on her upper leg and gradually, over two years or so, has extended to cover most of her body. She has good days and not so good days, and until recently we have been able to keep it at bay with natural, non-steroid creams and by avoiding soap-based products. However, the eczema has got worse over the last three months and earlier in the summer she had a horrendous flare-up that led to a dash to the local A&E department for treatment. She returned bandaged like a mini-mummy and with a prescription for various creams and lotions.
Once the dressings were able to be removed (approximately 48 hours after her midnight adventure) part of our twice daily routine became a gentle massage of all the affected areas with an emollient cream. For the first week we relented and used, sparingly, the steroid cream just to speed the healing. We soon discovered that the time spent massaging the cream into our daughter’s arms, back, neck, torso and legs became very special.
All the family became involved in the routine. In the first days this was a necessity as the discomfort and pain of the eczema made the changing of dressings quite traumatic for our little one. We all had a part to play, therefore; one ready with the fresh dressings and cream, one taking the old ones away, big brother (‘maximonkey’) reading stories to take her mind off it all, and our nine-year-old daughter (‘midimonkey’) efficiently assisting in the whole process (she would make a good nurse!).
A week after the flare-up the children were due to stay with their grandparents whilst my wife and I were involved in the Edinburgh Festival. We had already shown the elder daughter how to massage the emollient cream into her sister’s skin and to carefully check the worst affected areas. This was important in developing the empathy and understanding of another’s suffering and how we can alleviate it. This is such a valuable lesson for young people to learn. On a couple of occasions the patient had requested that her sister do this and we were moved and delighted to see that she did so with such care.
During the week that we were away, midimonkey often helped by massaging her sister before bedtime. The quiet time spent together allowed them not only to keep the eczema in check but also to come to terms with our being away. It brought them closer together and has created a lovely, caring bond between them.
So now we have an established routine. In the morning and in the evening, minimonkey, spreads a blanket on her bedroom floor, selects a story tape or a book to read, makes sure that ‘brave bear’, the soft toy given to her by the nurses in A&E to hold whenever she needs to feel brave, is nearby, and settles down. Sometimes Daddy is requested to do the honours, mostly Mummy changes the dressings (“You can do it, Dad, but sometimes you are a bit clumsy!”) and midimonkey helps out. It has brought us all together in caring for our youngest one.
There is something very special in massage; something beyond the physical touch. I found it quite difficult in the early days as I was afraid of causing minimonkey any pain. My wife has since convinced me that all I need to do is remain calm and be firm and my daughter will feel secure. The time spent focusing on someone else and attending to their needs has a meditative quality. The time spent with my daughter is priceless. Watching the two older children care for their sister has been wonderful.
The ‘monkey massage’ has now become a part of the family routine. It has helped to manage the eczema and brought back the quiet, reflective bedtimes that we used to have when our son was little. I would urge anyone who has a little one, either with or without with eczema, to spend a few minutes each day massaging them. If there are siblings who can get involved, then all the better. The physical and emotional bonds between parent and child are sometimes put under enormous strain by our increasingly fractured and pressured lifestyles. Take the time to ease that strain and to re-establish those precious and fleeting moments when we connect.
Topic(s): NSGCCE, Posts from Damien, Stories
Tuesday, August 31, 2010
Anna's Referral Story
I'm Anna Burton and have met you [Amanda] at support group meetings when they used to be held and I went to the eczema open day last September. Both my children Daniel and Abigail are under Sandra and we are regular visitors to her.
Both children suffered with eczema from within weeks of birth but it was with Daniel who we had the referral nightmare.
We repeatedly asked our GP for a referral to a dermatologist, but they kept saying to try another moisturiser. The whole team of health visitor said we needed wet wraps and a specialist but they even seemed helpless. I would have to sit holding Daniel through the bars of his cot to stop him from scratching to try and get him into a deep sleep. This resulted in him being in our room for over a year so I could hold him through the bars while I lay in bed too. Relatives questioned why I put photographs in an album when his face looked so bad red and painful. (It was that or no photos)!! He was dry and crusty all over. His Bedding regularly had blood on it from where he rubbed and scratched in his sleep. It was heartbreaking. The strongest steroid the GP would give us was Eumovate. Then one night Daniel cried and scratched through till the early hours of the morning. We called the out of hours GP and were seen at about 3am!! We were given piriton although sheer tiredness and the car journey sent him to sleep. 1st thing on Monday morning we went to the GP and finally the doctor agreed to the referral. We were sent to our local hospital, given Epaderm and Elocon. I was stunned, I had Elocon in the house for a different condition I was suffering. This was the 1st relief to his eczema in over a year. I then started going to the meetings of NSGCCE. What a great forward thinking group prepared to fight eczema and gave me hope.
I went back to our Dermatologist with Daniel one day with bleeding hands and they just said he had eczema and what did I expect???? I cried as I took my suffering baby back to the car, 'he has eczema what do you expect' was not a comment I expected from health professionals who I was turning to for help. I had not touched a drop of alcohol or coffee while pregnant and had exclusively breastfed him, had never risked a baby wipe and carried warm water and cotton wool wherever we went. Yet I had accepted the need for steroid creams and needed help. A hard step for many mums.
Then at a NSGCCE meeting Sandra said there were many different options for us and we should be able to get control which the group all agreed to along with yourself and Colin. I do remember being pregnant and crying on all of you at some point. Sandra suggested I transfer hospital. I went straight to the GP (carefully picking a nice one) and she agreed there and then and it was that simple she sent a letter off and we were soon fighting eczema with Sandra.
We still sink, but we have fight and periods of control. Both children are suffering this week for reasons unknown but I know Sandra is not far away. She is our life line. Daniel was in a constant mess before Sandra, now we have ups and downs but there are ups not just downs as before. I'm a regular in the Talk eczema message board and have said many times from my experience that you must fight for the referral you or your child needs and if not happy then change specialist. If only we could of got to Sandra sooner his first year of life needn't of been so painful. Thankfull for Abigail we had her ready to be referred before she was born!!!
Sorry to go on, hope this is a bit of what you wanted. Eczema has gone nuts here today. Daniel is drugged up on antihistamine and colpol. He said today to cancel his 6th birthday party next week as he so itchy. What is a Mum meant to do? Eczema does not leave the energy to fight health professionals. Thank god for NSGCCE and Sandra’s team. I can truly say that as I have experienced differences in attitude between hospitals in the same NHS system.
Regards Anna x
Webmasters Note: This is again, so similar to what we went through 14 years ago with our eldest daughter! Please, if there is anyone else out there that has had the same / similar referral difficulty. Let me know what it was like for you getting a referral. Good or Bad but honest. You can contact me via the website. Thank you.
The following is the follow-on conversation between Amanda Roberts and Anna Burton. It adds a huge amount to understanding some of the hoops that Anna has to jump through to get through all this.
[Amanda] Lovely to hear from you. I wonder if the change in weather temperature has any bearing on the way the two are at the moment? Whatever the reason, it is good to hear how much more confident you feel. Is Daniel at going to playschool school yet? We want to hear from you whenever you want.
[Anna] Daniel has finished his 1st year at school, he's loving it and can read really well already!! Time flies by. He is 6 on Friday. He is very brave but we do struggle. Abigail is at pre school and loves it. Daniel has a set member of staff who applies his creams every dinner time. He has struggled with his skin through his 1st year but school have learnt with us that some of their activities are not suitable for him. He more often than not wears cotton gloves to school. He used to have spiderman red, then being a good parent I dyed some blue to blend in with school uniform, but I have just dyed the latest lot Ben 10 green!!! Who cares about school colours keeping Daniel comfortable and happy is my priority. Pre school apply Abigails creams if she needs them. I often get a call from school or pre school asking about creams, sun or an activity, I know we are lucky to have this support but it has been through a lot of hard work and pushing for meetings with staff, I actually had 2 meetings in school before Daniel even started as I knew they needed to know what was what from day one. School got right behind me when they saw a terrible flare overnight from an activity, it shocked them and they felt very responsible.
[Amanda] Bet the school felt responsible – shame it took Daniel suffering to demonstrate it to them. It does sound wearing for you though. How do you look after yourself?
[Anna] Yes school only had my word how bad things could get along with photographs I'd taken in to show them. I did not have to say anything to them, he went into school looking like his face was burnt. I'd said enough at home and Daniel repeated it to staff!!!! They approached me with an apology and stepped up his care plan.
I smiled when I read your question about how do I look after myself. I have been the bottom of the list for the last 6 years. Trying to fight up now but I get the time that is left. Many times I have cried with my children, probably wrong but sometimes cannot be helped. Eczema certainly made my return to work low priority for me and husband. Daniel said tonight will his eczema be gone when he is a teenager? No idea where that came from and even if he understands what a teenager is??
[Amanda] Crying is natural and normal – it happens even when you are not struggling against massive odds. And it can be good for us (I expect I read that in Woman’s Own or something!).
Fewer mothers of children with atopic eczema are in outside employment (Arch Dis Cild 1993 69(6) Daud, Garralda and David). More of them feel stressed in relation to their parenting and less efficient in their disciplining. 1993 might sound like a really old piece of research – but I bet it is no different now.
Not everyone “grows out” of their eczema – but a lot do find their eczema improves with age. In fact, just heard from someone today who is hoping that this may be the case with their child after a remission of 5-6 months. Travelling with hope is always a better situation than otherwise.
Edited on: Tuesday, August 31, 2010 10:59 AM
Topic(s): NSGCCE, Posts from Anna, Referral Issues, Stories
Tuesday, August 24, 2010
Are our NHS GPs failing us?
When we or our children are diagnosed with Eczema, it can almost seem like an isolated experience. When you feel that uncontrollable urge to itch and non-eczema sufferers do not seem to get why you can’t "just stop". It can also be a depressing experience not only for aesthetic reasons and your self esteem but that feeling that you have no control (many times I have woken up and found I’ve already scratched myself to death in my sleep); there is also a distinct sense of self harm to it.
At times in this isolated desperation we search the internet for that quick fix, or confide in other sufferers for the latest "this really helps" treatment, which cannot always be relied on. What we do rely on however, is that if it all gets too much and our latest moisturiser gets too sore to bear, we can always see our local GP courtesy of the NHS to get the best possible help...right? When I'm asked on forms "who is your GP?” I never have an answer, why you ask? Because I am still yet to find one GP who quite understands my condition as well as they should or seem to care for that matter.
This year I have found that my eczema has been a lot worse than usual, what I would usually define as mild eczema (apart from when I eat wheat) turned into severe and constant bouts that I could not control. My usual treatments being rendered useless and blaming it on exhaustion I stopped my usual workout routine and keeping my existence as easily as possible. Soon I developed what was diagnosed as a viral rash, which was given steroid ointments for, which became large, painful spots/lumps on my legs. Again steroid ointment for me and now some blood tests.
After no conclusions apart from my blood showing signs of inflammatories, the various GPs that I saw the rash/spot/lumps had gone so therefore, I was ok. "What about my skin now?" pointing out how eczema is consuming my body, the response "you have eczema though, don't you?". Yes I do realise what my condition has already been diagnosed but should that really be a label no matter what the changers in severity are?
After yet another trip to the doctors and the doctor not saying a word a word to me after my complaint before I requested to get referred. Luckily for me my work place supply private health insurance so was referred to a private dermatologist. Going private managed to unearth that I have developed an infection and because no treatment was given an endless cycle was occurring. Also, I had a lot more allergies than I was originally aware (NHS will only test you for 5 things and you really have to fight for that as I found out years previous).
Now I am not a medical expert, but I would have thought just a simple infection was easy to spot, all it took was a week’s worth of antibiotics to get me back to my usual self. It is hard to tell what is simply "an easy mistake" made, or the fact that as soon as someone is diagnosed with eczema it does not matter how much we try and protest that our condition is worsening....it’s just seen as eczema plain and simple.
Now I understand that our GPs are not experts of skin conditions so we cannot expect them to know everything, but surely they must understand how stressful and exhausting it is for us to just get a little help, a simple referral would do. I do also feel angered about this eczema diagnosis being an answer for all when there could be underlying problems, I do feel that some GPs should have trust in patients to be able to identify when something is different. I had to suffer for over 3 months before I got as far as going private, only now I’m beginning to get the treatment I needed months ago.
My diagnosis? If you do not feel you are getting the treatment you feel you or your child deserve, ask to be referred.
Webmasters Note: This is so similar to what I went through 14 years ago with our eldest daughter! Is there anyone else out there that has had the same / similar referral difficulty. Let me know what it was like for you getting a referral. Good or Bad but honest. You can contact me via the website. Thank you.
Edited on: Monday, August 30, 2010 11:16 PM
Topic(s): NSGCCE, Posts from Louise, Referral Issues, Stories
Monday, August 02, 2010
My name is Roddy Jenkins and I have eczema. As a sufferer practically all my life of mild to severe atopic eczema - undergoing various treatments of creams, ointments, emollients, oral medication and several hospital stays - I decided that I wanted to help raise people's awareness of this skin complaint. They say the skin is one the major organs of our bodies, yet for the most part we don't give it a second thought.
So, as a keen(ish!) walker, I thought I'd undertake a walk to hopefully raise funds for the National Eczema Society with which to plough into the research of eczema treatments. The walk I have set my sights on is no mean feat. It is the 640 mile long South West Coast Path, straddling the coastline of Somerset, Devon, Cornwall, and Dorset, from Minehead to Poole Harbour. If the walk itself doesn't kill me, it might kill off the bits of flab that I've accumulated over recent years!!
(Webmasters Note: Roddy has set himself a massive target of £10,000 so will need help. If you wish to donate go to http://justgiving.com/Roddy-Jenkins to make your donation. Good luck Roddy.)
So if you're around and about in the South West of England during Spring 2011, please come and say hello...oh and give your support!! It'll be much appreciated!!
My eczema has, as you fellow sufferers will no doubt be able to testify, been to some extent a blight on my life. When severe flare-ups occur, I often feel extremely self-conscious - often over fearing the worst - and I feel that I want to run away from society and hide.
Having said that, it doesn’t completely control my life; I am able to more or less go about my daily tasks.
In recent months, I have been fortunate enough to discover fellow sufferers on Twitter, as\well as support organisations like Nottingham Eczema Support (@eczemasupport). Please feel free to follow me on Twitter (@RoddyJenkins), where I would be more than happy to 'swap notes and experiences'
Edited on: Tuesday, August 03, 2010 9:51 AM
Topic(s): Fundraising, NSGCCE, Posts from Roddy, Stories, Twitter
Tuesday, July 20, 2010
Sandra wins prestigious Stone Award
Sandra Lawton has been presented with the prestigious Stone Award, by the British Dermatological Nursing Group, for her contribution to dermatology nursing in the UK over 23 years, all of it based at the Queens Medical Centre site in Nottingham. During this time her practices have be adopted throughout the UK. Sandra is the ninth winner of the award. To see the full press release, click here. Well done Sandra, you deserve it.
Whatever else we do we have the quality support staff to back it all up, and that is priceless. Help us to help you by passing on our site details.
Topic(s): Awards, NSGCCE, Posts from Colin, Profiles
Wednesday, June 16, 2010
More Video Podcasts
Today we have put in a new section under “Podcasts”. We have called it Sponsored Events and is a place where we can put either video or photos in the form of a slide show from you. If you undertake a sponsored event and you are collecting for eczema related charities then let us have whatever images you have taken with an overview of “who, what, where, when, why and how” and we will publish it. You can contact us using the contact button above or even via Twitter, find @eczemasupport and talk with Amanda.
Topic(s): NSGCCE, Podcasts, Posts from Colin, Stories
Thursday, May 13, 2010
Audio Patient Information Leaflets Launch
Today we have great pleasure in launching our latest project, Audio Patient Information Leaflets (APILS). To compliment the current batch of printable PILS, we have started to transfer them into audio format. As this takes about 3 hours for each one they will be trickle fed onto the system so keep looking. The first three are available now.
Topic(s): NSGCCE, Patient Information Leaflets (PIL's), Posts from Colin, Site Improvements