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#944 - 03/26/02 08:17 PM Thank God I Found You
Crystal Lewis Offline
Member

Registered: 03/26/02
Posts: 13
Loc: Columbus, Ohio, USA
I am 23, and I have something called Icthyosis Bullosa of Siemens. My disease is very rare, and while online searching for info to take to my doctor's appointment- I found you guys. Praise the Lord!!!

I have been thinking of trying a Vitamin A derivative, but did not know what to expect- and after reading some of your individual stories, I now have more info.

I used to think I was the only one in the world with the every day challenges that relate to the Icthyosoform disorders, but now I know I am not alone.

I used to sit back and just yearn for someone I can identify with without feeling pitied- and I have found that here.

I used to wonder if I would ever have a normal life, and get married, and have children- but you are my proof that it is possible to move on and have a normal life.

Sometimes when we think we are most alone, that's we when we are in the best of circles.

Sometimes God will wait until you feel most isolated to prove there is always someone to hold your hand.

Thank God I found you.

-Crystal Lewis
Columbus, Ohio
_________________________
crystallewis1@yahoo.com
http://crstlblue.tripod.com

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#945 - 03/27/02 01:21 AM Re: Thank God I Found You
momofvi Offline
Member

Registered: 03/11/02
Posts: 20
Loc: Indiana, USA
Hello! I'm glad you're here too. I just came here this month too, and like you I was glad to find this group. I'm 31 and this is the first I had heard and talked to others like myself. I don't know what type of ichthyosis I have, but I grew up feeling like a freak and wondered many of the same things. I wondered if anyone would ever want to marry me also. I did get married and had 3 wonderful children, but my ex-husband had issues (like not being faithful, and he couldn't handle that our oldest son is visually impaired from glaucoma.) My children and I live with my boyfriend, who is a wonderful man and very accepting of all of us [img]http://www.ichthyosis.com/ubb/smile.gif[/img]. He helps me with putting on lotion and he's stood by me through my masectomy that I had in October. I just wanted to share some of the joys I have in my life now, we've all shared the pains. Welcome, Julene

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#946 - 03/27/02 04:18 AM Re: Thank God I Found You
PrayerKaren Offline
Member

Registered: 11/21/00
Posts: 84
Loc: Hemet, CA, United States
Crystal,

Glad you joined our family. My name is Karen and me, my daughter and my mother all have EHK = Epidermalytic Hyperkeratosis. The biggest reason for my writing you though is simply to say that you're obviously a Christian and i simply want to say that it's such a refreshing thing to see PRAISE THE LORD!!! On here from someone. And yes if we put it all in God's hands he will bring it all to a full circle and get the Glory for it. Like the song says, He'll take a bad situation, and work it for my good, if I know God. By the way, one of my favorite Contemporary Christian artist is Crystal Lewis [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

God Bless,
Karen Carey
prayerkaren
_________________________
Karen L. Sawyer

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#947 - 03/27/02 06:01 AM Re: Thank God I Found You
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Crystal and Julene
Welcome to our ichthyosis bulletin board and our ichthyosis family.My name is Les Avakian and I am so happy you found us.This is a wonderful website and place where we can ask questions, give advice,and share experiences what it is like to have ichthyosis.At one time or another, I think all of us have felt we were the only chosen ones to have this disease, only to find ichthyosis people is in every continent throughout the world.Crystal, I looked up Ichthyosis bullosa of Siemens and found it is very rare and represents a mild subtype of EHK.It appears to be due to a different keratin gene defect than EHK.Have you contacted our ichthyosis foundation FIRST at (215)631-1411.They have very good information on ichthyosis and the Ichthyosis Support Network might be able to put you in touch with other Ichthyosis Bullousa of Siemens people.If you have time, we meet in the ichthyosis chatroom on Wednesday nights, 9:00 P.M. eastern, 6:00 P.M. pacific time. We would love to have you join us. Take care Crystal and Julene, by for now.
Your central calif. ich friend,
Les
_________________________
Les Avakian

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