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#26861 - 09/06/10 01:24 PM 10 year old daughter with icthyosis vulgaris
sarahjane Offline
Member

Registered: 09/06/10
Posts: 7
hi everyone. My name is sarah and i have a ten year old daughter called jade who has suffered withskin conditions since she was 4 weeks old. i have always been led to believe that she has exzema but recently i have moved area and my new doctor has told me that she actually has icthyosis vulgaris. it has now been brought to my attention that my old gp was rubbish and now after 10 years i can hopefully stop hitting my head on a brick wall and hopefully help my daughter who is now very scarred around her feet and hands.

I am looking for any information on icthyosis vulgaris please so if anyone can help i would very much appreciate it.


my daughter also has many allergies..to so many things i cant actually keep up with. is this conected to icthyosis vulgaris or is she just very sensitive? look forward to hearing from you..xxx

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#26862 - 09/06/10 03:24 PM Re: 10 year old daughter with icthyosis vulgaris [Re: sarahjane]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Sarah
Welcome to our ichthyosis group and happy you found us. You can access ichthyosis information from our FIRST foundation at:www.firstskinfoundation.org. and can contact our staff at:info@firstskinfoundation.org.
Ichthyosis vulgaris is one of the milder types of ichthyosis caused by the deletion of the filaggrin gene. There is a study conducted with researchers at the University of Dundee,Glasgow, University of Washington, and Copenhagen correlating ichthyosis vulgaris, asthma, and eczema. The site is at:www.medicalnewstoday.com/articles/39974.php.
Many of the people with vulgaris use the alpha hydroxy creams with urea, lactic, glycollic, and salicyllic acid. Some of the products are Eucerin Plus, Carmol 10 & 20, Dermal Therapy Alpha Hydroxy Cream, Aqua Glycollic, Lachydrin 5% and 12%, Amlactin, LAClotion, Keralyt Gel, Lacticare, Triceram,and Kerol Lotion. Everything is by trial and error Sarah and what works for some will not work as well for others. Welcome to our group and I look forward to more of your posts.
Sincerely,
Les
_________________________
Les Avakian

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#26992 - 10/19/10 12:37 PM Re: 10 year old daughter with icthyosis vulgaris [Re: Les Avakian]
sarahjane Offline
Member

Registered: 09/06/10
Posts: 7
thank you so much for replying to my post!

maybe someone could help me with another querie?

i live in the uk but everywhere i look for info on ichthyosis vulgaris seems to be based in the U.S

does anyone have any links or ideas of how i can find out information from the UK?

many thanks...xxx

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#26994 - 10/19/10 04:04 PM Re: 10 year old daughter with icthyosis vulgaris [Re: sarahjane]
KarenM Offline
Member

Registered: 11/07/08
Posts: 35
Loc: Reading, UK
In the UK you can join the Ichthyosis Support Group:
http://www.ichthyosis.org.uk/
They have a newletter and meetings. They can also put you in touch with people who have the same condition as your daughter.

My daughter has Ichthyosis Bullosa of Siemens which is pretty rare so there aren't a lot of members with that, but I imagine there are quite a few with vulgaris. My daughter was also treated for eczema for quite a while before getting a proper diagnosis - it seems quite common!

You asked if there was a relationship between allergies and ichthyosis vulgaris: the answer is yes. Most people with vulgaris have allergies, eczema or asthma (which all commonly go together too for some reason).

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#27061 - 11/01/10 09:56 PM Re: 10 year old daughter with icthyosis vulgaris [Re: KarenM]
momdoc284 Offline
Member

Registered: 10/31/10
Posts: 14
Allergies just make IV much more annoying. My brother and I both have IV but his was much worse because of his allergies. I remember being a teen/preteen with IV and would be happy to talk with you if you need help with your daughter. No medical background but been there done that.

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#27063 - 11/01/10 10:42 PM Re: 10 year old daughter with icthyosis vulgaris [Re: momdoc284]
sarahjane Offline
Member

Registered: 09/06/10
Posts: 7
Lol thank you so much! I have never felt as supported as I do now that I have joined this forum!

I looked online today trying to research a little into goat milk soap. The woman who owned the company is going to make me up a load of samples so we can try them. I can't wait to let her try it!

Also I have purchased some pure aloe vera gel from simply body care. Done a patch test today and so far so good!

So momdoc...where are you from?

we live in england....but I am originally from scotland.

do you

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#27064 - 11/02/10 12:43 AM Re: 10 year old daughter with icthyosis vulgaris [Re: sarahjane]
momdoc284 Offline
Member

Registered: 10/31/10
Posts: 14
I'm in the US, TN specifically. I just saw a ton of great stuff from the UK when researching eczema clothing. Got a US alternative to try and it seems to be helping. Watch the fabrics you put on your daughter as scratchy stuff makes me much worse.
I was just thrilled when I got on here and saw how many people have had itchy babies like I do. It is difficult and helps so much to know others have survived it!
I am now 33 and have so much experience dealing with my skin that often derm will not believe me that I have IV. I can keep mine in great shape. Mine got a lot better as I got older. The teenage years were the hardest but the good news is I never had acne :-)

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#27084 - 11/03/10 09:16 PM Re: 10 year old daughter with icthyosis vulgaris [Re: sarahjane]
Promiseland Offline
Member

Registered: 07/30/08
Posts: 160
Sarah Jane,

I posted another message to you elsewhere that if your daughter could not sweat she most likely does not have I.V.

And if you or your extended family and her father and her father's extended family do not have symptoms, it is most likely not I.V.

It is not unusual for a derm to pick I.V. as a diagnosis for anyone with ich symptoms. By definition, vulgaris means "common." 90%+ of all ich cases are I.V. But the vast majority of these cases are mild. There is no sweat disorder involved. For the small minority of I.V. cases with sweat disorder, the underlying ability to sweat, and to sweat quite profusely, is still present. These cases just need hot and humid weather to facilitate sweating. I am speaking from experience.

So, if your family is not familiar with ich symptoms, and your daughter cannot sweat at all, she probably has one of the rarer forms of ich.

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