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#16121 - 08/22/06 01:32 AM Concerns About Lamellar
HJPinSanDiego Offline
Junior Member

Registered: 08/21/06
Posts: 3
Loc: California
I am a 45 year old female with Lamellar Ichthyosis but I live a wonderful social life. Any one out there know if this condition affecting the connective tissue and blood stream? Right now I'm being followed up with Doctors at UCSD and had done an ANA blood test. I'm so concerned.

HJPinSanDiego

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#16122 - 04/03/07 04:23 PM Re: Concerns About Lamellar
CHLUKE2003 Offline
Member

Registered: 10/25/03
Posts: 19
Loc: ANDERSON,SC,USA
I am almost 58 years old and so far am still in very good health, so maybe you shouldn't worry for 13 more years.
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#16123 - 05/24/07 05:59 PM Re: Concerns About Lamellar
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I don't know of any correlation but in my experience whenever doctors are having a hard time reaching a diagnosis they tend to say "It must be related to your ichthyosis." It would probably be a good thing for you to do as much research as you can and encourage them to continue testing for other ailments rather than just chalking it up to ichthyosis. I would contact FIRST and ask them to help you get in contact with some of the medical board members. Dr. Fleckman in particular comes to mind as someone who could tell you if there's a correlation.
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I am female, and was born in 1972 with Lamellar Ichthyosis.

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#16124 - 05/25/07 04:40 AM Re: Concerns About Lamellar
pauline5 Offline
Member

Registered: 01/06/02
Posts: 913
Loc: Melbourne, Australia
YES, EVERYONE, be careful not to let your general practitioners put any unexplained symptoms down to your ichthyosis...or any other pre-existing conditon for that matter...

having grown up with many friends who have disabilities...we have lost a few to cancer in the past few years, because their doctors blamed their cancerous symptoms on their disabilities, and before you know it, before their symptoms were taken seriously...IT WAS TOO LATE...AND THEY BOTH DIED...

I was so angry about this, and always implore my husband who had Cerebral Palsy to have any problems properly investigated as if he DIDN'T HAVE CEREBRAL PALSY...

PLEASE BE CAREFUL GUYS...Similarly one time i had an infection in my breast, i tried to tell my GP that it was an internal infection, and he thought it was just a skin boil or somehting, and within 2 days my whole breast swelled up to double normal size, and i had blood poisoning, and I was very sick...

Turned out i had somehow got Mastitis...and i don't have children or breastfeed. He was very apologetic after that, and no longer assumes anything untoward is just my skin...and goes along the normal investigative channels.

Please take note of these examples guys...
Love Pauline

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#16125 - 06/20/07 04:40 PM Re: Concerns About Lamellar
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
I am 28 with LI and I don't think this condition affects blood. I have been able to donate blood and plasma with no problems.
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If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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