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Embarrassing Fat Bodies, 12:30am Monday 27th October 2014 on More 4. Catch up for free on 4oD »

Video

Voiceover: Dionne Rodden suffers from a condition so rare that for twelve years no one has been able to identify it.

Dionne: It first appeared when I was about thirteen years old, about two weeks after I decided to shave my legs for the first time. I went to the doctors and they told me I was actually allergic to the razors. That was the first thing I was told. I then went to see a dermatologist and they told me it was a very bad form of eczema or a skin condition but they couldn’t give me a name for it. They didn’t actually know what it was. Actually my skin cracks apart and peels, then it fuses itself back together again, then cracks apart and bleeds, fuses itself back together again. It’s absolute agony. I’ve took to actually bandaging my legs whenever that would happen. Applying lots and lots of cream to it, then taking the bandage off would be a problem as little parts of the bandage would be embedded in the skin and it would be agony to try and tweeze little pieces of bandage out of my legs.

Voiceover: Dionne has suffered for twelve years, often bedridden with the pain. She’s seen dozens of specialists but no one knows what her condition is. After twelve years of suffering, Dionne decides to visit the embarrassing illnesses clinic.

Dr Dawn: Come on in, take a seat. Tell me what can I do for you?

Dionne: I have a skin condition on my legs where it peels apart and stretches and it bleeds.

Dr Dawn: Is it sore?

Dionne: It can be very, very sore.

Dr Dawn: Well, I probably need to have a little look actually, Dionne. Can I get you to pop up on the couch?

Dr Dawn: Ah, ok. And this is good is it?

Dionne: This is it at its best.

Dr Dawn: When it’s bad do they flake off?

Dionne: Yes and it will bleed through these cracks here and that’s when it will crack and bleed.

Dr Dawn: So it actually cracks on these paler areas?

Dionne: Yes.

Dr Dawn: I think it’s something called Ichthyosis, have you ever heard that term before?

Dionne: No.

Dr Dawn: No? It’s a condition where the skin scales much more than normal because, of course, it’s normal for us to shed skin, skin cells only live about 14 days and then we shed them. People with Ichthyosis tend to shed much more skin, they produce more layers of skin and they shed it more. It often does crack so it scales and cracks so exactly the kind of thing you are describing. There’s bad news and good news. The bad news is it’s not curable but the good news is there’s quite a lot we can do to make it better and this certainly isn’t the worst case I’ve seen, ok? Jolly good.

Voiceover: A specialist dermatologist prescribes another set of creams but this time she has to apply them in an altogether new way.

Dionne: This is one of my rituals that I have to go through on a daily basis which is mixing two creams together then applying the cling film, which I then take off about hour to two hours later. Occasionally I’ll sleep with it on.

Voiceover: After twelve years, has Dionne at last found her miracle cure?

Voiceover: For years no one has been able to diagnose Dionne’s scaly legs. Dawn came up with Ichthyosis and prescribed a simple cellophane and cream treatment. But, did it work?

Dr Dawn: Hi Dionne. Come on in. Now tell me, how have you got on?

Dionne: Everything is going quite well actually.

Dr Dawn: Really?

Dionne: Yeah.

Dr Dawn: Shall we have a little look? Oh wow! Dionne, that’s loads better. That is phenomenal!

Dionne: It’s fantastic. Now I don’t have to worry about bandaging it up anymore because there hasn’t been any splitting or cracking whatsoever.

Dr Dawn: That’s incredible!

Dionne: It’s fantastic.

Dr Dawn: You’ll be wearing shorts and skirts, won’t you this summer?

Dionne: Summer here I come!

Dr Dawn: That’s phenomenal. I’m really pleased. They look great and they feel great.

Dionne: Yeah. I’m well happy now.

Dr Dawn: Well done! That’s brilliant. Well, thank you for coming back.

Dionne: You’re welcome. Thank you for your first diagnosis, otherwise I might not have known. Bye.

Dr Dawn: Take care.

Read the video transcript

Consultation: Ichthyosis

Dr Harper treats a women for the skin condition Ichthyosis, with amazing results.

UPDATE

The treatment given to this patient was a combination of Cetraben, Culmurid and Eucerin and then a cling film wrap, but it might not work for everyone so best to go to your GP and get their professional opinion.

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Comments and Questions

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At age 12, while on summer vacation in Canada my grandmother took me to a dermatologist. At that time, I as given a name ichthyosis. I was told that it would never go away but given precautions on how to best live with this conditon. I do not take hot baths/showers, I cannot wear wool directly on my skin, I have to moisturize immediately after every shower, I cannot sleep on anythng other than 100 % cotton or cotton sateen/flannel to name a few things. I remember telling me grandmother after she asked if I wanted to see another dermatologist, "if anyone is going to marry me, they will have to accept me just the way I am." Now at 46 yrs old, there are much more products available. For several years I have been using a product by Aveeno, and recently they repackaged and changed the formula. So now I have to start all over again looking for a new product. Like many of you, the effects of this disorder can be felt in the scalp, feet, hands and legs. Living in Canadian climate is no fun for my skin, especially in the winter, but I cope. FYI, for those who thinks that the hot climate is better, it isn't. The only time that my skin is ever supple anywhere, is in the rainy season. I guess I should thnk about relocating to Vancouver or Seattle. I hope tha I have been able to shed some insight into growing older with this skin disorder.





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Hi i am a 38 year old mum of three. I have gone from being outgoing and sociable to a total recluse. I am undiagnosed my doctor isn't helping me find out what's wrong i feel like i don't want to wake up in a morning because everyday it takes me hours to make myself look how im supposed to look!!! My eyes have completely changed shape due to skin that's invisible to everyone else that's grown over my entire body and head my eyelashes ar buried and so is my hair i have to wear a wig because my hair is encased and is very dull and corse like sweeping brush texture. Its difficult to get eyeliner that will hold as the skin has some kind of barrier. When looking in a certain light i can see blonde shiny doll type hairs in the skin. When i pull these out the extra skin appears to go. But this is very painful as its very well established. I feel frustrated and totally let down by the nhs. No one will listen not even my partner everyone thinks its in my head. Even though i have to wear a wig they can see the change in my hair. I cant wear skirts because the build up of this invisible skin looks like orange peel/cellulite. It looks unattractive and is very hard to cover with fake tan ut just wont soak in the skin. HELP!!!!!





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My daughter has congenital Ichthyosis Lamellar. You can notice more in her joints; elbows, little hands, knees and the bottom of her feet. We started using the the SRLotion about 4 months ago, and after a week, we noticed when we bathed the new skin was replaced and the dead skin fell off when wet. It just fell off! It's fantastic! It does INDEED work, and I will continue to buy this product. Truly remarkable.





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Hi,am just18.I have this embarassing condition of flaky and dry scales like skin.wen I was a child I tot its somethg that would actually go off after puberty. But the condition wasgetting worsened. Am not able to skirts oranythg that end up showing my legs. My parents even went care about it. They just say apply a lot f oil. But there s no use of it till now and they am notable to consult even a dermatologist. Am much tensed.. Please suggest me precautions and names of ointments. Reply soon anyone





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My all over body scalp of itchyosis. i dont know what is the best treatment. can you help me. please





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Hi I am a 50 years old I suffer from itchiness all over my body and makes it difficult to sleep.recenty relized tea makes it worse and in a hot climate it's better. I need to no what I can do to get it cured.





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I'm 36 years old and have just discovered that the skin condition I have is Ichthyosis. Its bothered me for so long. Now I have a name to the condition, I feel I have something to work from. Its good to see also a person of colour in the film. I feel reassured that there are others like me affected and still staying positive. Thank you.





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Hi all I am a 38 year old male who has suffered with this condition from birth. My Grandfather also suffered from it. Until about 7 years ago i was very agitated and fed up with my condition and was also embarrassed as dark clothes would show up any flaky scalp etc. I have used everything from calmurid, cold tar shampoos and creams to E45 and every other thing on the market. oilatum in baths, hot towels with oil on scalp. I discovered Eucerin lotion with 10 percent Urea and if applied every day after a shower my condition is hardly visible. I use the shampoo also with is perfume free etc as is the cream. I also discovered a Eucerin sun cream in Portugal about 4 years ago but have enquired in Irish pharmacies a few times but they dont have it. My Mum did say that she saw an advert in the Indo for it last week so maybe we up to speed finally. I ran out of lotion for 3 weeks lately as there was a shortage of it where i live and it was a nightmare without it. With it i feel like i dont suffer from any condition but without it I sure do. It also doesnt build up on my skin like other lotions do. I have no ulterior motive for recommending Eucerin only that it has given me my life back. There was talk of products containing Urea being removed from the market, something to do with the processing process and carbon footprint. If they stop making Eucerin my life will be unbearable and very painful. Please try it guys, i really hope ye get the same relief that i do.

Do people with ichthosis find their skin is very sensitive? I have a hard time finding washing powders, body lotions, soap etc that don't irritate my skin. I have asked the Dr for a patch test to find out what breaks my skin out. My symptoms do not warrant a test. But if he spends £100 a month on lotions and potions, electricity on washing and re washing clothes he may think again. It's making me feel really stressed.





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I am 60 years old and have had ichthyosis vulgaris from birth. It is probably now the best it has ever been but it will never go away - if I don't do my usual skin regime for a few days it just reverts back to being as bad as ever. I put about two tablespoons of salt - ordinary cheap salt nothing fancy - in my warm bath and I scrub my skin with one of those screwed up plastic things, I think they are called body buffers, then when I'm dry I put on Aqueous cream all over; baby oil or even olive oil are also very good particularly if you rub it in while you are still wet and then pat yourself dry or, if it's warm enough, just let yourself dry! A warm climate always helps my skin, too - shame I live in England! Good luck to you all, I know it's depressing but my skin has definitely got better with time.





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I have the same problem till I can't get married because of my hard skin everywhere and I m not fell confidence if some people wanted to shake my hand or winter come I have to struggling a lot .spending money with lot of brand lotion soap and peeling but there's no results sometime fell why this happening to me? And I'm 29 years old now I never fell that massage on my body ever *(





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i also have a problem of ichthyosis n my age z 16 n em so worried abouttt it so wottt should i do .... sometimes i feel dat i should die ... is there any treatment of ds disease or can my skin come on normal position

Hi, I've had VERY dry flaky skin all over my body all my life (I am 41) and a couple of years ago I also developed rosecea. It was then that I switched all my moisturisers, shampoo, conditioner, shower gel to paraben and sls free products and also started using pure almond oil too. I also use exfoliating mittens every day BEFORE showering on dry skin. Doing this really has helped. I also discovered that I have a mild case of ichthyosis vulgaris on my legs, so I 'invested' in SR Lotion. This stuff is AMAZING! after just one week my legs were really smooth and no longer have that horrible scaly look. I now only use the cream once every other day (which makes it last longer as it's quit expensive) but it really has changed my life. Anyone with severely dry skin or ichthyosis must try SR Lotion! I hope that helps. Cx





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