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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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#16090 - 12/09/06 06:56 AM Re: Bathing suit ichthyosis
scarlettaz Offline
Junior Member

Registered: 02/25/01
Posts: 1
Loc: phoenix, az., usa
I think this might fit me, but since I don't have insurance, I can't get to a dermatologist to find out. My icthyosis was diagnosed as Llamelar when I was born but it is not ALL over. MY face is clear (other than zits, lol), my legs other than the back of my knees and the tops of my thighs are clear, my arms have no signs other than in the recess of the elbow a times. My feet and hands get dry and stuff but not in the same pattern. My neck is affected on the sides and back and it's in my scalp and ears. So...is this something anyone else has dealt with? Is it BSI?
_________________________
scarlettaz

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#16091 - 01/23/07 05:18 PM Re: Bathing suit ichthyosis
susanadale Offline
New member

Registered: 01/23/07
Posts: 4
Loc: Northwest Missouri, USA
I am so excited! This sounds so much like what my son has. My DS is 17 months old and has been diagnosed with Lamellar. His Derm, who's a member of FIRST's med board, has never seen it present quite this way, though. He has scales on his chest, tummy, diaper area, neck, and scalp (including his forehead). The rest of his face is totally clear. His legs are totally clear except for the backs of his knees. The outside of his arms is completely clear, but he has heavy scaling from his armpits down to the inside of his elbows. His hands and feet are clear. He sometimes gets some peeling skin between his toes and fingers, but it's cyclical and not severe. His back was almost completely clear (except right at his tailbone), but it has gotten a little bit dry and scaly with the cold weather (still not nearly so bad as the front of his trunk). The line between the scaly parts and unscaly parts is very clear---it is almost as though he's wearing a shirt, so I can understand the "bathing suit" name.

And when I say "clear", I don't just mean free of scales. The texture is totally different, like "normal" baby skin. I don't moisturize those areas at all and they don't change---his Derm was astonished at this. Initially, we applied Aquaphor from head to toe. But then these areas got smooth and stayed smooth. When it came to reapply the ointment, I found the smooth areas were soft, supple and oily feeling, while the scaly areas were dry and brittle. I figured, why not see what happens if I leave the smooth areas alone? So I have, and those areas are still doing great.

Actually, I'm in a bit of a quandary. I want to give little Peter the very best quality of life I can. It helps that he has a very happy, laid-back personality. It also helps that his older brother and sister love him and accept him as he is and don't seem to really notice his condition. But I can't help but suspect that spreading petroleum products over half his body might be detrimental in the long run. I'm also not crazy about the addition of Lactic Acid. Sure, it helps remove scale, but it does not change the texture of his skin at all and the scale comes back quickly. Is there a more natural way to achieve the same result?

------------------
Susan
_________________________
Susan

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#16092 - 02/08/07 02:54 PM Re: Bathing suit ichthyosis
Mama T Offline
Member

Registered: 09/27/06
Posts: 17
Loc: Ellicott City, MD USA
Eline,

How did your doctor diagnose BSI?

Your description sounds a lot like my son Trevor's (2 years old) presentation of LI. He is mostly affected on his abdomen, diaper area, neck, armpits, and scalp (the most problematic area). Like Susan's son, the skin on Trevor's face and the rest of his body is soft, "normal" skin.

Genetic testing confirmed that Trevor has LI, but his derm is puzzled about why he's only partially affected by scales. He could only guess at the possible reason (something about different gene mutations inherited from my husband and myself).
_________________________
Jennifer

Proud Mama of:
Trevor / Jan. 2005 / Lamellar
Spencer / Nov. 2007 / Lamellar

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#16093 - 02/09/07 12:48 AM Re: Bathing suit ichthyosis
twinpapa Offline
Member

Registered: 09/21/02
Posts: 13
Loc: Cheshire,CT,USA
These descriptions match Jonathan (4.5 VERY active years - Lamellar) to a T. Arms and Legs clear except back of the knee, inner elbow, tailbone, scalp, etc.

We use a mix of 1 part PDS Extra Strength, 1 part Aquaphor, 1 TBS of Shea Butter which works wonders. P&S Liquid helps on his scalp but we have a hard time with scalp scale and itching.

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#16094 - 02/09/07 09:53 PM Re: Bathing suit ichthyosis
graciesmom Offline
Member

Registered: 02/10/06
Posts: 155
Loc: orange park, florida,usa
Everything you are describing sounds just like my duaghter's skin. We haven't had testing done yet but have been told that she has LI (a mild case). She was a collodion baby and once the skin came off she was extremely dry and scaly. At about 11 months her skin totally changed. Her face never scales and is very soft, her forehead gets dry at times as well as behind her ears. Her neck, scalp, armpits, behind her knees and elbows, and diaper area are affected. All these areas are very dry and scale at times. I hardly ever put lotion on her stomach and back during the day and her skin remains soft on these areas. I wouldn't say her legs, arms and face are totally clear. Although they never scale, the texture of her skin is a bit different than "normal" skin, it's just not as soft. The only thing different for us is that Grace's hands look the classic LI hands....very wrinkled and dry (and cracked at times between her fingers). Whats funny is that her feet look perfectly normal. Let me know what you guys think.

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