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#137 - 10/15/00 08:57 AM K.I.D. Syndrome
Shane's mom Offline
Junior Member

Registered: 10/11/00
Posts: 4
Loc: Citrus Heights, Ca U.S.
I have just found out that there could possibly be an effective treatment for Lamellar ichthyosis, but the pharmicutical companies will not engage in making this as they feel their is such a small demand, and not enough money. I am very angered by this and would like to ask EVERYONE no matter what type of ichthyosis you are familiar with to please write your congressman and the pharmacy company's. I wonder if one of their children or themselves were affected they would think it was worthwhile. Anyone willing to jump on this band wagon with me?

[This message has been edited by Shane's mom (edited November 08, 2000).]

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#138 - 10/17/00 11:50 AM Re: K.I.D. Syndrome
Carly Offline
Member

Registered: 10/02/00
Posts: 86
Lisa, that is a very tragic story. I feel for you deeply.

I have not had a child, i am 18 years old, but I know that from my mum's experience during pregnancy,I was born three weeks early, and breach. I suffer from ichythosis form erythroderma, and had a lot of problems as a baby, including being underweight (most of my life I have been underweight) and i lost a lot of hair. I had heart troubles, bone troubles and the doctors did not expect me to live much past birth.

I don't know if my information helped you, but I wish you the best.

Carly

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#139 - 10/17/00 06:04 PM Re: K.I.D. Syndrome
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
Obviously, I can't begin to say the right things, and I don't even know if I can help, but I thought I would offer you some online reading material.
Here is a case study for a 14 year old girl who suffers from KIDS. The references noted at the bottom might lead you to some more education material to read. http://www.sums.ac.ir/IJMS/9634/pezeshkp9634.html
Some info about reasearch being done on this syndrome: http://www.rarediseases.org/new/kid.htm
And http://www.nfed.org/research.htm
I hope maybe this can at least help you to know that there are dedicated groups of doctors out there who are working for a cure, or at the very least some understanding. You might even want to contact some of these groups to see if you can be involved if you wanted.
If you want more links, or want to talk, please email me.

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