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#20958 - 04/22/08 07:43 AM Re: Body Image
libby Offline
Member

Registered: 02/25/05
Posts: 356
Loc: USA
Hey Peter,

I was just wondering what type of ich you have? I have a 12 year old daughter and the weather is changing along with her skin. We are currently using lachydrin, and it is doing an OK job. Do you think Dermal Therapy is much different? I contacted to co. asking if they give out samples. Our medicine cabinet is chock full of creams and lotions. Don't really want to add another if it won't do the job!!

Thanks,
Olivia mom to Claire nb-CIE

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#20959 - 04/28/08 07:50 AM Re: Body Image
peter mackean Offline
Member

Registered: 04/19/08
Posts: 20
Loc: Littlehampton, W Sussex, UK
hi libby
sorry for late reply, my skin it seems was a mild form of IV, that is to say i had scaling over much of my body with no red lesions, bad enough that no lotions of any type here in the UK could touch, mostly manky oily types and some with urea, i had been on acitretin (vitamin A supp) for 15 years and it has made me ill with aching joints etc. my skin too worsens with the weather and decreases when sunny, if that ever happens in the UK.

I think the important lesson that i have learnt and i hope may be of use to any sufferers out there is keeping dead skin soft with creams doesn't cure the problem, it won't go away.

most creams etc just sit on top of the scales and can't be absorbed, the dead scales need to be exfoliated first as much as is possible, then and only then can any lotion/creams be absorbed properly to nourish and maintain moisture and a more natural skin.

the more posts i read, the more i realize how different peoples regimes are, and that most treatments differ from here in the UK, so it is difficult to say what works or not. I know what worked for me, if your treatment isn't working then try it, it's a trial and error.

hope it works
lol
_________________________
pete mackean

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#20960 - 04/28/08 03:49 PM Re: Body Image
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Peter,

You do not have "mild" IV. People with mild IV have scales only on very limited parts of the body, particularly the lower legs. Maybe some on forearms. They would not have issues over skin care that requires participation on this board, let alone issues with national health care service of a government.

You may have X-linked or severe IV or one of the rarer types. If you could sweat, sometimes a lot especially in the summer, you probably has X-linked or severe IV, depending on the size and shape of the scales.

Glad you have found an exfoliating agent that has worked so well for you. Good luck.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

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#23391 - 12/04/08 12:10 AM Re: Body Image [Re: immystique]
Anonymous
Unregistered


hi everyone,

i like being honest about what i have, and what i have is a disease.. calling it a disease isnt a bad thing, its only being true to yourself, i know being affirmative is great and telling urself that ur special is awsome, BUT you will never change unless you come to terms with the fact that you have a disease that makes you different from other people and once you accept and live with it instead of feeling sorry for yourself, then you can move forward and socialise and make changes..

dont sit there and wait for the world to change, get up and change it for yourself...

People we have a skin disorder, thats true, but are we paralysed?? or physically incapable of going out there and making a difference to our lives and maybe the world??

Our skin looks different, i say SO WHAT? get OVER IT... you only live once, im not gonna waste my preciouis life by just sitting around feeling sorry for myself and hoping other peoples pitty will save me... get out of the hole that you dug for yourself, and LIVE...

i got over it and now im at uni studying med science, maybe ill help in research for our condition one day.. maybe ill find a cure, maybe ill do whatever i put my mind to... thats the way we should be thinking, we need ambition and determination... i know we are a minority but we can contribute so much to this world in this short time that we each have to live...


People are people, they can be ignorant, stupid and rude, and when they make comments or ask lame questions we have to put up with it, its become part of our life, we have to just answer it with a smile and move on.. dnt let it crush you emotionally... i guess if i didnt have icthyosis then id be ignorant too.. having ichthyosis has made me really compassionate understanding and caring towards others, and thats one of the many advantages that came with ichthy.. although the disadvantages are greater, id rather not dwell on them, id would much rather, scrub my skin or wax it, do my hair and makeup and work on my image so that i can boost my confidence .. spend time on yourself, you deserve that little dit of attention, make it a daily routine not a chore...

good luck to you and to everyone that might feel the same way... change will come.. smile

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#23536 - 12/28/08 08:49 PM Re: Body Image [Re: Raven544]
snowhead44 Offline
Member

Registered: 12/28/08
Posts: 12
Loc: Wisconsin
Well,I also have a sucky life.I have never had real friends except for 2,I mostly sit by myself at lunch,and in a school of over 2,000 people I have only about 5 people who will even speak to me.You should check out my blog.http://monica44.blogspot.com/
_________________________
Hey.Check out my blog.Look at an inside on my life.http://monica44.blogspot.com/

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#28556 - 07/25/12 09:52 AM Re: Body Image [Re: Raven544]
peter mackean Offline
Member

Registered: 04/19/08
Posts: 20
Loc: Littlehampton, W Sussex, UK
an update after 4 years
its kind of reassuring to see no more posts were put here, concerned with body image
i wonder how many went off to buy Alpha Hydroxy Lotion
i wonder how many have actually benefitted from its use
is it working?
be good to get an update

my skin is better than ever, my confidence has increased, my life has changed for the better and people dont notice even when i tell them i had a condition
_________________________
pete mackean

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