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#66 - 10/25/00 05:01 AM Re: Introductions and Life Stories
trish Offline
Member

Registered: 09/13/00
Posts: 6
Loc: alberta.can
hi this is trish,im 37 years old and have a son and daughter.My son and I were both born with icthyosis.Now at 11 my daughters shouwing slight sighns on elbows and knees.Not comparable with ours.But for 2 years now weve been using soriataine25 for me and 10mg for my son whos 13.I feel like ive been given another life, a normal one.This drug is working so well for myself ,i havent had to scrub or hide my hands, and best of all my skin doesnt come off anymore when i bump myself.There are side effects though,yet not too bad so far.One fellow has used this effectivly for 12 years, no side effects.My sons skin is not as good as mine but it has made going to school almost bearable.
My mother also has icthosis,as did her father,and out of 11 children 9 of them got it.My mother had 5 kids and im the youngest and the only one who got it.
I dont have to use creams any more, but when i do i stand behind Olive Oil and Vaseline 100%.

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#67 - 10/27/00 01:44 AM Re: Introductions and Life Stories
Carmen Bare Offline
Member

Registered: 08/13/00
Posts: 15
Loc: Brsibane Australia
Hi,

My name is Carmen Bare and I am from Australia Brisbane. It is wonderful to find someone from Australia and have Ichthyosis because maybe we can talk about creams and things that we have here. What works and what doesn't. Can't wait to here back from you. Please e-mail me at carmen@igconcepts.net can't wait.
_________________________
CB

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#68 - 11/07/00 12:04 PM Re: Introductions and Life Stories
Shane's mom Offline
Junior Member

Registered: 10/11/00
Posts: 4
Loc: Citrus Heights, Ca U.S.
Quote:
Originally posted by Figaro:
Hi!
I've been lurching in here for quite some time now. Just wanted to say that I've finally dared to register to this forum. Next step will be to actually write something sensible in here.

Remember, I'll keep watching you...

/me jumps back up on top of the bookshelf, where he hides from preying eyes

Hello Figaro,
My name is Lisa and whenever your ready there are many people waiting to hear your story. You are safe here, come out and meet us.

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#69 - 11/11/00 01:15 AM Re: Introductions and Life Stories
CJ Offline
Member

Registered: 11/10/00
Posts: 5
Loc: New York, NY
Hi all, I'm a new member. My name is CJ. I'm 37 female and was born with ichthyosis, mild case. None of my siblings have it.(I think an aunt of my father side had it as well) My mother first brought me to doctors when I was a year old. After numerous tests over several years, they still didn't know what it was. I was told that my oil glands didn't work and there was nothing they could do. During the winters I took vitamin E pills for two weeks and then skipped a week. My mother also covered me with "Bag Balm" a thick (disgusting smelling) vaseline used for cow's udders. It wasn't until about 4 years ago that I was finally told exactly what the name of the disease was. Besides my arms being bumpy, dry and flaky; the build up on my elbows, knees, and heels; my shins seems to be the worse. Especially in the winter. If not lotioned often they crack and bleed. Although the one good thing, if you can say that, is that I have absolutely no hair growth on the majority of my legs. [img]http://www.ichthyosis.com/ubb/smile.gif[/img] It really cuts down on the shaving, although I don't use a razor (it causes alot of abrasion) I use a mustache trimmer. It really does work wonders and I get no prickling blood dots.
Of my 2 children, only one has ichthyosis. It is even milder than mine. He is 12 and didn't develop signs of it until about age 7.
My doctor prescribed Lac-Hydrin 12% for us both. Although almost any type of lotion seems to do the trick. I just have to be careful when I apply lotion when my legs are extremely dry. The stinging can be very bad.
I must relate to you a very funny story. (At least now I can laugh about it) A few years back, after a shower I decided to take a heel file to see if it would help in exfoliating my arms. And for the final touch I applied lots of lotion. Well I was ok for a few minutes after that but oh boy my arms began to sting so bad!!! After about a half hour of total pain it began to diminish and my arms looked as if a half crazed cat had gotten a hold of them. Well so much for crazy ideas.
So anyway, thats my story. I hope I read more interesting stories.

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#70 - 11/16/00 01:27 AM Re: Introductions and Life Stories
Lois Offline
Member

Registered: 11/15/00
Posts: 5
Loc: Hollister CA USA
Hi guys, I'm Lois, 48 years old and I live in Hollister CA.(earthquake capital) [img]http://www.ichthyosis.com/ubb/wink.gif[/img] I've posted a few times on the old site but it's been a long time.

I'm the youngest of seven children and the only one with what they all referred to as "Alligator Skin." The first time it really became a problem was when the health nurse visited our first grade class - took one look at my arms and legs and sent home a note to my mother that I was a "dirty" child. My mother - bless her heart plopped me into a bath loaded with Tide detergent and began to scrub me raw with an old wooden scrub brush. Then she slathered me in witch hazel lotion that burned like crazy!

When the weather warmed up, I started having heat strokes because of my inability to sweat. Well...dear old mom decided if she put me in the car with the windows rolled up, I'd get so hot I'd have to sweat. Back in the hospital I went, near death. Still no one knew what was really going on.

In high school, during PE my gym teacher accused me of wearing nylons under my shorts and demanded I remove them immediately. I told her I wasn't wearing any so she pinched my thigh trying to grab hold of the "nylons" still not believing me. It was really funny at the time, but as I got older my skin became more of a problem with really flakey scalp/ears and white spots appearing on my arms when I got tanned.

It wasn't until I was in my mid-twenties I finally went to a dermatologist and he diagnosed ichthyosis. I assume it's vulgaris because from all the pics I've seen, vulgaris looks the most like what I have.

Now that I'm old and crusty, I seem to have more and more problems with clothing irritation and feeling like I've reburned a healing sunburn.(if that makes any sense)

Like I said before, I'm the only one of seven kids with it and no one else in the family has it.

I have two children now. My son has eczema - my daughter too only in a few places and now I've got it on the palms of my hands.

I have crohn's disease as well as irritable bowel. Chronic Intestinal Pseudo-obstruction(another rare disease) and high blood pressure added themselves to the list about ten years ago. I think the intestinal diseases are connected with the vulgaris somehow, since if I'm this dry on the outside - I must be pretty dried up on the inside too because I have a real problem with dehydration. I drink lots - but if I drink a glass of water I pee two glasses worth.

Sheesh....that was a heck of a long story - sorry! Haha!

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#71 - 11/18/00 02:28 AM Re: Introductions and Life Stories
Janice Offline
Junior Member

Registered: 09/27/00
Posts: 2
Loc: Chatham, Ontario, Canada
Hello everyone

My name is Janice and I am 32 years old. I have had a form of ichthyosis since about the age of 1 year. It is called epithelial nevus. I have thick scales on my feet, knees, elbows, hands, neck etc.

I used to be very self concious about my skin when I was younger, mainly in highschool. Now it's a little different. My son who is 6 months old has inherited ichthoysis bullosa. It was present at birth. I had no idea it was even hereditary. My first child was fine and my parents didn't have any skin conditions either. My son is doing pretty good now. He is more content than he was in the first few months. He doesn't blister that much anymore so I think that has a lot to do with it. His looks just like mine and I find it so weird to see someone else with the exact same conditon. I have learned so much in these last few months about ichthyosis because of Mitchel. Up until now I never talked to anyone else about this. I didn't know there were groups on the internet, I really didn't even know what the medical term for my condition was. Pretty sad eh!
Thanks to this web site I have been able to communitcate with others in the same boat. What a relief to know you are not alone. When Mitchel was born I wondered how I was going to take care of him and my daughter at the same time. It seemed like a lot of work, but time does wonders and now I don't really do anything different than I did with Hannah except rub him down in the tub.

My husband has been wonderful through all of this. So supportive and caring and patient. He is a millwright and I was laid off from my job earlier this year. I worked in a factory building International Trucks. So now I am going to stay home and take care of my children until I can no longer handle it. Sometimes I feel like I need a break so we will see how long this lasts.

Well I have rambled on enough.
Thanks for the information.
Janice Doforno

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#72 - 11/20/00 09:18 PM Re: Introductions and Life Stories
Chandra Offline
Member

Registered: 11/20/00
Posts: 707
Loc: Grants Pass, OR
I could write a book for this one!
I'm 28, have Lamellar Icthyosis all over. I don't know if all people with Lamellar have it all over like I do or if it's possible to have in patches, but I'd be interested in knowing.

Childhood in a nutshell was hell. I wnt through a lot of teasing, many illnesses, and had a parent that had a lot of problems coping. I was raised by a single parent who was very vocal about fears and thoughts that I was ugly, no one would ever love me, I was going to die young, etc. I grew up thinking the same things. After I left home for college, a whole new world opened up for me. I got my degree, was able to make my own decisions about what doctors to see and how to take care of my skin. My skin improved drastically, I got a lot of counseling, and I made a lot of friends.

I met my husband about a year after I was out of college. He's helped me increase my self confidence a lot, and while I have a hard time believing him when he says I'm beautiful, it makes me feel better about myself when he says it.

I've learned to become more vocal when seeing doctors. I've tried a lot of different things for my skin and unfortunately there isn't a whole lot that works for me in terms of lotions and creams. But I have learned that outside of making sure I moisturize my skin frequently with products that work for me, the best thing that helps my skin and the rest of me is to be with people I enjoy, laugh a lot, make sure that the job I perform is one I enjoy, and to appreciate what I have got. I have learned that I cannot let my skin dictate who I am and how I live my life. While it is a part of me, it is not all of me.

My husband is a fantastic man, and very supportive. We have 3 "kids" two dogs and a cat. I have a lovely job that keeps me interested every day and the people I work with are great. It took me a long time to be where I'm at today and I wouldn't trade it for anything. For any kids with ichthyosis, no matter how hard it may seem being around other kids, there are people out there who care about you, even if you don't know it at the time, and things will improve as you get older.


While it may seem kind of funny, the stuff that I have learned is relevant for anyone, not just someone with ichthyosis.


[This message has been edited by Chandra (edited November 20, 2000).]
_________________________
I am female, and was born in 1972 with Lamellar Ichthyosis.

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#73 - 11/21/00 05:45 AM Re: Introductions and Life Stories
jana Offline
Member

Registered: 11/20/00
Posts: 23
Loc: Eva, Alabama 35621
Hi everyone,I'm Jana and I live in Alabama.I have EHK type .I am 37 yrs. old,married for 13 years, and have 2 sons,11 yr. old with milder case of EHK and a 6 yr. old with normal skin.We cannot find anyone else in our family with it.I have 2 older brothers with normal skin.I agree with Lisa,I LOVE my Vaseline!!My son and I go through about 5-6 of the larger jars a week!I should own stock in that company.LOL.We usually shower with anti-bacterial,moisturizing soap and "grease down" with the Vaseline morning and nite,especially when its cold.I got kidded some in school but, in general, it has helped me to become a better person on the inside.Thats not to say I wouldn't love to have normal skin and never touch another jar of Vaseline,but I know I wouldn't be the person I am today if I didn't have this.I graduated from college in 1986 with a degree in Social Work but I am stay at home mom right now until kids get older.I'm sooo excited to meet all of ya'll.My 11 yr. old son is in 5th grade in public school and is really handling things great!He doesn't get kidded too much(that I know of).He goes to a smaller school and alot of people know me so I think that helps for them to accept him more.Its really nice to "meet"you all.ya'll are welcome to e-mail me if I can help anyone or ya'll just want to talk.Just put "ichthyosis" so I'll know who its from.Thanks!! Jana

------------------
Jana Gourley
_________________________
Jana Gourley

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#74 - 12/02/00 05:10 AM Re: Introductions and Life Stories
Francisco Viedma Offline
Member

Registered: 08/29/00
Posts: 5
I was just reading the stories from everyone, and felt urged to tell you all my own.
My name is Francisco, although everybody since I was born calls me Pachi. I was born in Granada, Spain on December 27th, 1977 with lamellar ichthyosis. The only cases of the condition in my family are directly related to me. My mother had a total of 8 children, of which two died. They both had lamellar ichthyosis as well. My other five brothers are what most people consider "normal".
I grew up in a medium to small Mediterrenean city where very little was known about ichthyosis. My parents, to whom I will always be grateful, did the best of all jobs bringing me up in life. Helping me realize that I was not less just because I had ichthyosis, and that I could do all I wanted in life anyway.
So went I finished Highschool in Spain, I decided I wanted to study in America. I went to college in Minnesota from 1995 to 1998. Graduated with a Marketing degree and went on to earn a Masters in International Business from Webster University in Saint Louis, MO, where I live currently. I am bilingual Spanish/English and fluent in Italian and French. I was the President of the International Club at my college and also presided the Spanish Association during my grad degree.
And that brings me to today... I started working for a international local firm here in St. Louis and will probably head back to Europe sometime next year for good. I love America though!
Please don't think my life has always been beautiful, because it has not. I just tend to be very optimistic at all times. Sure I went through teasing in highschool and get asked about my skin about one a week, but I justify people to a certain extent. My theory is that we are all "animals of custom". What we are used to, does not surprise us. So if you see a man in a suit, it does not bring your attention, because you see people wearing suits everyday. But if you see somebody with one leg, or with ichthiosis, etc... it is only human to wonder what happened to that person, and maybe stare at him or her for a second or two. I still don't like being stared at anyway.
I am single... hey! I am still 22! I've been kind of lucky with relationships, since even though I have been with not too many girls, I found one that really loved me and showed me what true love really was. Unfortunately she had to leave back to her country and I found myself alone again.
I finally take this opportunity to congratulate you all for your multiple ways of coping with the condition.
Thanks to Laura as well, I have learned so much about the condition through your website!
Regards,
Pachi.
pachi95@hotmail.com

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#75 - 12/02/00 03:25 PM Re: Introductions and Life Stories
deb Offline
Member

Registered: 12/02/00
Posts: 15
Loc: london, ky,usa
Hello all!
I am brand new to this entire area. I am almost 40 years old, yet I did not find out what was wrong with me until 3 months ago! I normally can get my thoughts across better than this, but I am a little emotional. Here is my story. When I was born, the doctors told my mother I had premature wrinkled and dry skin. She sent me to several doctors when I was younger, yet no one could really help. This continued for years. I too was harassed in school and called names like 'alligator skin' and 'prune'. I met a wonderful man 22 years ago, who loves me as I am and we have two wonderful sons, ages 18 and 20. This past spring, a miracle happened. My family doctor quit and I began seeing a new doctor! My new doctor took one look at me and demanded to know what my old doctor had been doing to help. She then sent me to one of the top dermatologists in our state.She immediately did a biopsy, told me that she thought that it would reveal ichthyosis and recommended some OTC creams until we got the results. She called on a Friday night to confirm that the biopsy revealed ichthyosis and she recommended I search the web for info until my next appointment. I took her advice and spent over 5 hours reading all of this site. By the time I was through I was an emotional wreck! For years I had suffered and didn't know why and here were people just like me!My dermatologist has been trying all sorts of creams, etc. Right now I use Carmol 40 and Lachydrin. The problems I am having are that I seem to develop a resistance to new creams very quickly and they quit working. My doctor says our next step may have to be Accutane, but I am real hesitant.I just want to thank everyone who has ever contributed to this site! Just knowing that every symptom - from overheating to light sensitivity,is common with this disease, makes me feel better. Until my diagnosis of ichthyosis, I thought I was turning into a hypochondriac! Once again thanks for being here and thanks for your patience- I know this is long!

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