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#16080 - 07/07/06 02:47 PM Bathing suit ichthyosis
Eline Offline
Junior Member

Registered: 07/07/06
Posts: 3
Loc: Belgium
Hello,
I'm 26 years old and I've got lamellar ichthyosis. Recently they've found out I've got Bathing Suit Ichthyosis (BSI), a peculiar phenotype of lamellar ichthyosis.
Doctors coudn't give me more information than this, because I'm the only person with BSI in Belgium.
Are there other people with BSI who can give me more information?
Thanks, Eline

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#16081 - 07/07/06 09:03 PM Re: Bathing suit ichthyosis
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Hi Eline

This is what I found on it. It really does not say much, but kinda makes sense why they call it Bathing Suit Ichthyosis.I have also posted the link at the bottom of this artical where I found this info.


Eur J Dermatol. 2005 Nov-Dec;15(6):433-6. Related Articles, Links


Bathing-suit ichthyosis. A peculiar phenotype of lamellar ichthyosis in South African blacks.

Jacyk WK.

Department of Dermatology, University of Pretoria, Pretoria, Republic of South Africa. witold.jacyk@up.ac.za

Autosomal recessive congenital ichthyosis is a heterogeneous group of disorders of cornification showing a wide spectrum of clinical phenotypes.Here, thirteen cases of a so far unreported distinct type of autosomal recessive congenital ichthyosis are described. All the skin lesions were present at birth and ten were then compatible with collodion baby. Shedding of the collodion led to an ichthyotic condition with a very characteristic distribution of the lesions which involved the trunk, the most proximal parts of the upper limbs, scalp and neck but spared the central face and extremities. The term "bathing-suit" ichthyosis is suggested for this unusual phenotype of lamellar ichthyosis.

PMID: 16280294 [PubMed - indexed for MEDLINE]


HERE IS THE LINK:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Display&dopt=pubmed_pubmed&from_uid=12865578

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#16082 - 07/07/06 10:57 PM Re: Bathing suit ichthyosis
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
There has been someone else who has posted on this Bulletin Board with BSI. When she posted she referred to her type of ich as "bathing trunk distrophy" so you may not have found it if you tried a search for BSI.

At the time of the post, she was in the Netherlands which, as a BENELUX country, is close to you. She said she was the only one in the Netherlands with BSI, just like you said you're the only one in Belgium. Since the post is from 2001, you may want to email her directly to initiate a contact. Her email is provided as part of her profile.

Good luck getting in touch.

Here is the link
[url=whohttp://www.ichthyosis.com/ubb/Forum1/HTML/000183.html][url=whohttp://www.ichthyosis.com/ubb/Forum1/HTML/000183.html][url=whohttp://www.ichthyosis.com/ubb/Forum1/HTML/000183.html]whohttp://www.ichthyosis.com/ubb/Forum1/HTML/000183.html[/url][/url][/url]

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#16083 - 07/07/06 10:59 PM Re: Bathing suit ichthyosis
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Opps, I messed up that link. Here it is again.
http://www.ichthyosis.com/ubb/Forum1/HTML/000183.html

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#16084 - 07/09/06 10:19 AM Re: Bathing suit ichthyosis
Eline Offline
Junior Member

Registered: 07/07/06
Posts: 3
Loc: Belgium
Hi Erin,

It's like Shandra says: I don't have scales on my face, my arms and legs. Only on trunk, neck and scalp. So I'm lucky to have this mild form of ich. The unlucky thing is doctors don't know much about it, because it's a rare form. They think it's recessive, but they aren't 100% sure because they don't know the gene that causes the disturbtion.

Shandra and Gryphon, thanks for the information. I really appriciate it.

Eline

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#16085 - 07/10/06 05:38 PM Re: Bathing suit ichthyosis
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Eline

Hi. Maybe you could check on the F.I.R.S.T board to see if there is any Dr's in your area that might be more familiar and helpful to you. If you don't know the site it is: www.scalyskin.org I will check with our son's Derm to see if she knows anything about your type or any Dr in Belgium. She is great and knows so much about Ichthyois. She is one of the Directors on F.I.R.S.T and was at the Conference in Atlanta. I would love to see pictures of this type and have found none. Do you have any you could post?
Shandra

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#16086 - 07/10/06 08:58 PM Re: Bathing suit ichthyosis
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
The only doctors that I know of that are experts in ichthyosis are a man in Germany named Dr. Wolfgang Kuester and a man in Lausanne, Switzerland named Dr. Daniel Hohl. If you contacted one of them, they may be able to direct you to someone in Belgium.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#16087 - 07/10/06 09:52 PM Re: Bathing suit ichthyosis
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Elise
Thank you for your post and I hope others will be able to respond to your question. We all know Sophie, Aida, and Leo Lucas from St. Laurents, Belgium who can give you advice on doctors in your country.They just left our national ichthyosis conference in Atlanta Georgia, and are at Camp Discovery in Minnesota at the moment.Next week they should be home and can help.Take care and by for now Elise.
Sincerely,
Les
_________________________
Les Avakian

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#16088 - 07/11/06 09:02 AM Re: Bathing suit ichthyosis
Eline Offline
Junior Member

Registered: 07/07/06
Posts: 3
Loc: Belgium
Hi everybody.
Since 1 year,I've got a new doctor. Prof Morren from the Universaty Hospital in Leuven. She is specialized in icht and works together with the German doctor Traupe (also specialized in icht) I've already met prof. Kuester when he was in Belgium. I'm very happy with the research they all did. The thing is, BSI is very rare. They only know about more or less 10 people all over the world who have this peculiar phenothype of icht.
The doctors said (very carefully)BSI was resecive.
But, thanks to this forum, I've met Carolien from the Netherlands. She gave me the information I needed. She confirmed BSI is recessive and the chance our child will get it, is very small. I've waited long for answers, but now my biggest wish can come true: a baby.
Thank you.
Shandra, I'm looking for some pictures, if I've found some, I'll post them.

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#16089 - 07/11/06 07:04 PM Re: Bathing suit ichthyosis
shandra Offline
Dakota's mom Lamellar
Member

Registered: 10/07/05
Posts: 349
Loc: Cape Coral, FL
Hi Eline

I received your email with pics. Thanks They look great. I emaield you back.

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