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#76 - 12/06/00 10:27 PM Re: Introductions and Life Stories
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
Deb, isn't it nice to know you're not alone? I am very greatful for this bulletin board too. I have never gone to one of the FIRST conferences, but my husband and sister and I are thinking of going to the next one. You might want to check out the information on it by following Laura's links to the FIRST web site.

Keep us posted on what happens, and if you have any questions about anything your doctor wants you to try, I am sure every single person who visits here would be more than happy to share experiences and give you a few tips.
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#77 - 12/30/00 08:24 PM Re: Introductions and Life Stories
Ken Roberts Offline
Junior Member

Registered: 12/30/00
Posts: 4
Loc: Orlando, FL USA
I'm Ken Roberts, age 52, from Pennsylvania originally, having lived in California and Florida the last 27 years.

I don't ever recall being diagnosed, but around age 14 remember my dad giving me a small slip of paper on which he'd typed "Ichthyosis" and what treatments should help. like "coal tar"

We were extremely poor, and I was never given any cream nor treatment of any sort while growing-up.

Grade school and high school were pure Hell, between the itching and being repulsed by girls. I can't recall being in comfort 1 day from birth through age 18 during the winters.

So I focused on baseball during springs and summers plus swimming, and school work the rest of the year. I rarely spent time on social life until around age 18.

The itchiness was overwhelming, and I'd shave my body especially my scalp so as to reduce the irritated skin, pouring most any fluid I could on my skin.

Around age 8 I swore to myself I'd move to a warm climate as soon as I could -- the move was delayed by college, and then I headed to California for law school, where I lived in relative comfort the next 20 years.

Doctors diagnosed me as having dry skin -- well, I knew that.

Think that I have Ichthyosis Vulgaris...and it's 20 times worse in cold weather than in moderate weather...and 5 times worse in moderate weather than warm weather.

I recall being irritated and going nuts in Palm Springs, California one weekend in the winter several years ago. So dry weather makes it worse too...But if I'd have the choice between WARM weather and MOIST weather, I'd take WARM weather any day!

I have no real problems sweating, that happens regularly.

During the summers in California I was in Heaven. Have since moved to Florida for a variety of reasons, and am relatively in splendid comfort about 10 months of the year, only December-January is a problem.

Three products that work best for me are Denorex Medicated Shampoo, Scalpicin, and 99% Pure Aloe Vera Gel.

I'd never heard of Acutane until Laura Phillips mentioned here. Thank you, Laura, I will try it out...I will try anything.

I continue to keep my hair very short, as it seems necessary to get the proper amounts of fluids onto my head, particularly Scalpicin.

Wish that I could find and buy some salicyclic acid as it relieves the itching better than anything else.

I've also noticed that tomatoes and grapes eaten regularly help the skin as well.

[This message has been edited by Ken Roberts (edited December 30, 2000).]
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Ken Roberts

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#78 - 01/04/01 12:53 AM Re: Introductions and Life Stories
Douglas Offline
Junior Member

Registered: 01/03/01
Posts: 1
Loc: Alma,Michigan USA
Hi, I am almost 67 years young and have had icthyosis all of my life as have my uncles,,cousins, and some grandchildren. I have tried just about all of the treatments that have come along .....even spending three weeks at the University of Michigan in the derm unit. For a while I was on tegison and I cleared up for a while but in my mind I believe it caused me to have gall stones. I no longer take anything and just go on day to day...........The way I feel .....if the people don't like to look at me.........that's their loss...ohh! on top of having this disease , I also have cronic psoriasis....havve had that now for over thirty years...........

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#79 - 01/09/01 02:15 AM Re: Introductions and Life Stories
Mark Waters Offline
Junior Member

Registered: 09/25/00
Posts: 3
Loc: London, UK
Hi, my name is Mark, I'm 30 and I guess I should be unhappy, as it's winter here in London and my skin is going mental. I have ichthyosis Vulgaris, the mild one they say, but for me it's just..... well hell really, so much itching it's unreal. Well, enough self pity. I'm lucky in a way as I don't have the stigma of people wondering why I look odd. Reading the messages on the site, makes me feel lucky.

I live and work in London. My passion is Salsa and I teach it in several of the clubs in London. My worst times are after I've been dancing and I'm 'hot', ie I can't sweat to cool down and then I get really itchy, but it's worth it, I guess. I wouldn't stop it for the world, the dancing I mean.....

Although, I find it hard to cope sometimes, it might be so much worst were it not for the advice and treatments suggested by the people on this board. So thank you. I hope one day that I will find something that will make the itching go away, maybe a warm climate one day!!!

My dream is to learn Spanish and live there in the not too distance future.

Well, enough from me.

Whatever your story is..be happy and remember, we have one life to live.

Mark

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#80 - 02/02/01 04:44 PM Re: Introductions and Life Stories
allisen5 Offline
Junior Member

Registered: 02/02/01
Posts: 1
Loc: Edmonton, Alberta Canada
Hello everyone. My name is Lorri, and my husband, children and I live in Edmonton, Alberta, Canada. I am the mother of a teenage daughter with EHK. I am so happy to say that I just found this BB. You all seem like such a wonderful group of people and I an happy that my daughter now has a group of people in a similar situation to hers, that she can communicate with.
When I was 19 I married a man with EHK. During my first pregnancy I was told there was a 50-50 chance of the baby inheriting EHK. In December of that year I gave birth to a beautiful baby boy with normal skin. We were told however, that he would need genetic testing later in life to see if he was a carrier. Almost a year and a half later I gave birth to a beautiful little girl, who looked normal except for the milky white appearance of the soles of her feet and palms of her hands. The doctors and nurses at our small town hospital (outside of Vancouver, BC at the time) had never seen this before. When Kady was 11 hours old she developed blisters in her diaper area. The Head Nurse and I poured through the hospitals medical books looking for an explanation (my ex-husband's Mother said he had blisters as a baby but it was mis-diagnosed at the time as Ritter's Disease). We found out it was blistering common with Ichthyosis. The next morning Kady's skin started coming off in sheets, leaving behind very red, raw skin. Fearing infection, her doctors decided to send her by amulance to Vancouver Children's Hospital. They had to shave her beautiful head of dark hair to put in the IV (which took three tries so most of the hair was shaved). I was able to hold and nurse her for a few minutes until the Ambulance Attendants arrived to whisk my baby off. I was told at the time that she had a 50-50 chance of survival. I was scared out of my mind. Having had a C-Section, I was still confined to the hospital but, allowed out on a day-pass to travel to Vancouver Children's Hospital to see her the next day. When I arrived, Kady was in the Neonatal ICU, in isolation, in an incubator. The appearance of her skin had worsened overnight. At least 50% of her skin had come off by now, and she was red all over. The nurses told me they were scared because every time they tried to change the dressings on Kady, more skin would come off. I washed up, slipped on a gown, hat, mask and gloves and stepped into her room, reached my hand into her incubator and told her how much I loved her, how beautiful she was, and that she was a very strong little girl who was going to come through this fine. A nurse then came in to help me remove her from the incubator so that I could hold and nurse her. I prayed the whole time, and for days later, until I was told (about a week later) that she was strong enough to be transported back (by ambulance again) to our smaller local hospital she was born in. When she arrived there, she was placed in an incubator, in a small isolation room off the main nursery. At this time, our 17 month old son was allowed to come visit (after scrubbing, and putting on his own gown and mask of course-infection was still a possibility). Kady remained in hospital for another week and was then allowed to come home. For the next six weeks I could not used disposable diapers on her, or even wrap cloth ones around her. To do so would cause skin to fall off. While she was an infant I used glycerin, rose water and vaseline on her skin. The skin seemed to thicken on her knees when she learned to crawl, and by the time she was a year old, all the flexural creases (hands, feet, kees, neck, underarms, backs of knees, elbows), as well as her scalp all showed signs of EHK. Regardless, she was an adorable baby with a huge smile and bubbly personality, whom everyone commented on how beautiful she was. When she was 11 months old I entered her in a "Beautiful Baby" contest, and she won first place. When her win was announced, I told the judges what a self-confidence booster this would be for her when she is a bit older, due to the EHK. They had no idea what I was speaking about and said they didn't notice anything abnormal about her in her pictures.
Of course, as time has gone by the skin has become thicker and darker in some areas. When Kady has a bath or goes swimming the EHK affected skin turns snow white (embarassing for her even now), and although thick the skin is easily knocked completely off, leaving behind very raw, and sometimes bleeding skin underneath. When she was about 7 years old, she had a large piece come off the back of her heel, and she almost passed out when she looked at it.
Kady is now almost 15 years old and still is a beautiful girl, inside and out. When she was a tiny baby, I feared for her future. I was afraid people would be rude and mean. I never wanted to see my daughter cry, or be left out in any way with friends. That has almost never been the case. When she started preschool, and each year after that for the next six years or so, I would meet the teacher and children, explain Kady's condition, and that it is not contagious - rather, that this was just a difference that she was born with, just each of us are born with differences. Kady has always had an abundance of friends, and always been popular but, I do not credit myself for that. I credit Kady's bubbly personality, her love of life, her wonderful sense of humor, her strong sense of self-worth, her contagious smile, her loyalty to friends, and her sparkling friendly eyes and attitude.
Kady is in Grade 10 now and has already had two boyfriends this year. The first of which was a very popular boy. Kady, still showing her sense of self-worth, dumped him like a hot potatoe when he acted, shall we say, less than the gentleman he should have been. You go girl!!!
Wow, this has been a long post! I have spoken here as a mother but, I think it would be more interesting for everyone to hear this story from Kady's point of view, so in the next few days I will have Kady herself post a message to everyone. Although she is a strong girl, she knows no one her own age with EHK, and I know she will feel at home with everyone on this BB, an no doubt get some valuable insight, and advice. Thanks for listening to this very proud mother!



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Lorri
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Lorri

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#81 - 03/16/01 04:58 AM Re: Introductions and Life Stories
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
I guess sharing a life story with ichthyosis is difficult. I cannot begin to tell you how blessed and cursed I am having this problem. I only know that I am a better, more caring and of course understanding person with ichthyosis. However I still get upset when my skin is dry or looks too dry. But I have gotten used to it. I am constantly puting on creams and oils to lubricate the skin. I guess I feel like the tin man (woman) in the Wizard of Oz. But at 28 I am finally understanding why I have this.

[This message has been edited by sofia (edited March 15, 2001).]

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