Introductions and Life Stories

Posted by: Laura Phillips

Introductions and Life Stories - 08/29/00 03:04 PM

Someone suggested that it would be fun to hear people's life stories "in relation to Ichthyosis- successes, frustrations, relationships, families, careers, sports, treatments may be a helpful starter to let other people know what is possible in terms of a normal life; but also to let people know there are frustrations and problems." You guys all probably know more about me than you want to [img]http://www.ichthyosis.com/ubb/wink.gif[/img] from the rest of the site, but I thought I'd go ahead and start this topic, as I'd love to know everyone else's stories, and I think it's a good way for people to get to know each other. So, here goes...

I'm 31 and I have lamellar ichthyosis. I was born a collodian baby, and spent several weeks in the NICU before I was able to go home. My family struggled, mostly trial-and-error, to find things that worked for managing my skin. When I was 6 years old, we went to Philadelphia to see Dr. Eugene Van Scott. Dr. Van Scott is somewhat legendary in the dermatology world, especially when it comes to ichthyosis, and he has done a lot of pioneering research into the use of alpha hydroxy acids. His latest venture is PDS, by NeoCeuticals. His creams (those that I still have custom compounded from when I first went to see him when I was 6 and now also PDS) are really the mainstays of my treatment of my ichthyosis.

Going to school was hard for me (like for most people with ichthyosis). I was lucky, in that we lived in a reasonably well-educated, middle class suburb where people were generally pretty savvy about medical conditions and differences. However, "pigskin" and "scab" were the nicknames that I was popularly known by up until about high school. I slowly won (very hard won) respect from my schoolmates, most of whom eventually stopped calling me names or doing anything toward me that was motivated by my skin, and absolutely made some great friends. However, I certainly wasn't with the "in" crowd, didn't go to school dances and such, and spent most of my after school time at the stable (more about horses later).

I took Accutane for 17 years (I last took it when I was 28). Accutane was a HUGE improvement for me. Having taken it for 17 years, I've got a lot of experiences and opinions about Accutane [img]http://www.ichthyosis.com/ubb/wink.gif[/img] but I'll save those for another post.

I married Chris in 1997. Chris is wonderfully supportive and accepting of my ichthyosis (as were all of my boyfriends prior to Chris). This website and this bulletin board wouldn't exist if it weren't for him--Thanks Sweetie!

Chris and I lived in Manhattan for several years (which we loved [img]http://www.ichthyosis.com/ubb/smile.gif[/img] we'd love to go back someday). We're now living in Cleveland, Ohio.

Almost my entire life I have ridden horses. I competed extensively when I was younger (and was nationally ranked) in showjumping, and continue to ride now. Chris and I just bought our first horse together in April. His name is Stanley, and that's how we spend most of our free time. Overheating was, and continues to be, my biggest problem with riding. I also continue to push myself beyond healthy limits, and let myself get way too hot when riding (guess I'm still trying to be "normal"!). I'm surprised I can think at all, for all the brain cells I must have killed going into heat exhaustion from riding.

I'm a CPA at a Big 5 public accounting firm. I specialize in financial services, and am nationally recognized for my expertise in accounting for derivatives and hedging activities. I've spent a lot of time in client service (where I'm constantly interacting with new clients) and I've never had an issue with my skin in the workplace (I'm self-conscious about it, mind you, but I've never had it be an issue with a client).

Holistic remedies for ichthyosis is a more recent interest of mine. I'm hoping I'll continue to learn more on this front, and find better and easier ways to care for my skin.

I'm on the Board of Directors of FIRST, and try to support FIRST in any way that I can (however, PLEASE don't confuse www.ichthyosis.com with FIRST; www.ichthyosis.com is a personal venture that Chris and I do on the side, that has nothing to do with FIRST...it's totally separate). Maybe it's the anal auditor in me [img]http://www.ichthyosis.com/ubb/wink.gif[/img] but I guess I feel the need to clarify--whatever I say on this bulletin board and on this website in general is my personal opinion, and is NOT the policy or official stance of FIRST. I've actually tried to down-play my position on the Board of FIRST on this website in order to minimize any confusion, but I think it's significant in terms of my 'life story' and what's important to me. I hope to see FIRST grow a lot in the coming years; it really is the best vehicle we all have in terms of encouraging more research to be done, and getting access to the best, most authoritative information about ichthyosis.

I'm so glad that we can do something to help people share information about ichthyosis. Even though I can't spend the time that I would like updating the website, I'm glad we've at least gotten this far. I really enjoy meeting all of you. Here are some older pictures of me: http://www.ichthyosis.com/laura.htm
Iíll post some recent pictures of me here in the next few days.

Laura

(you guys better not leave me out here alone on this! I'm really looking forward to hearing about other people's experiences and background).

[This message has been edited by Laura Phillips (edited December 08, 2000).]
Posted by: Anne

Re: Introductions and Life Stories - 08/30/00 01:08 AM

I guess I will be the first one to introduce myself
Posted by: Les Avakian

Re: Introductions and Life Stories - 09/05/00 04:34 AM

Hello All, well just thought I would post to the introductions and life stories.As some of you know my name is Les Avakian,45 years old, and I am from Fresno, Calif.I have X-linked ichthyosis and today begins another season of its affects.The temps have fallen into the mid-70`s, my skin begins to dry,scale, and the itching begins.For the next two weeks,I will be in my adjustment phase, adapting to the itching and applying lachydrin.
X-linked was passed from my grandfather to my mother to me.Also my mother`s sister passed it on to my male cousin.The family called it only dry skin and we used an assortment of over the counter cremes.When I was 10(1965)my mother took me to Stanford Univ.Medical Center.Doctors didnt know what to make of the dry skin, until a Chinese intern, Dr. Lee or Shirlee,correctly diagnosed me as having X-linked ichthyosis.She exclaimed there were many people in China who were afflicted. I was prescribed Eucerin creme and to occlude with seran wrap.The eucerin creme lasted until 1983, the seran treatments lasted two weeks.LOL.The scales dont bother me as much as the constant itching.In school, I was always uncomfortable in the cold weather months and always irritable.
In 1977, I earned a Bachelor of Science Degree in business administration and started my own electrical contracting business.The enjoyment of meeting new people on every job doesnt allow one day to be boring.My hours are flexible and I am my own boss.

In May 1982, I was watching the local talk show advertising the beginning of a central valley chapter of the ichthyosis foundation.I couldnt believe others had ichthyosis like myself.At the first meeting, I met 6 other people just like me with X-linked and one 12 year old girl with lamellar.The thrill of exchanging similiar experiences was exciting.Our first fundraiser was a garage sale,then a wine tasting and silent auction, and a volunteer bureau walkathon all to raise money for the foundation.In 1983, Dr. Peter Elias gave me Lachydrin 12% lactic acid and my life has never been the same.It smooths the scales and helps with itching.After trying all the over the counter cremes, finally something that works.In 1984,the mother of our lamellar girl married and moved to San Jose, our leader married and moved to Montana, and we lost contact.
In Jan. 1999, my nephew gave me his computer, and by chance I punched in www.ichthyosis.com and here this marvelous site came up.I have corresponded with so many people from all over the world with ichthyosis.I have to personally thank Chris and Laura Phillips for this site and bringing me back into the ichthyosis foundation again.Well I have rambled on enough, take care all.Bye for now. Les
Posted by: sonia

Re: Introductions and Life Stories - 09/05/00 05:24 PM

Life stories continued...Hi all! My name Sonia Patel, I live in London, UK, I'm 33 years old and Ihave a 5-year-old daughter with lamellar ichthyosis. When Aiesha was born, she looked as if she'd been passed through a paper shredder. I couldn't tell baby from skin and I had to stay in in hospital an extra 3 days (you may not think that is much until you try the food) as she could not maintain her body temperature. She became known as the "special baby" as doctors and students alike came to check her out and take notes - but no-one really did anything. When we finally went home, our local doctor came and diagnosed ichthyosis (we did not know at that point that there were over 20 different kinds of ichthyosis, neither, I think, did my doctor). So, for the next 4 and half years we battled with the scales, the dryness and itching trying almost any product suggested or prescribed. We'd have a few days of "hey, this is really good stuff", buy in bulk to avoid running out, and then finding that it didn't work so good any more. I always dreaded the day when Aiesha would start school and come home crying because a child would tease her about her skin. Suprisingly, it was the adults who were insensitive, asking what was wrong with when she was standing there.
Many people suggested Chinese medicine but there have been a few horror stories in the UK about eczema suffers having renal failure after Chinese medicine so we gave that a miss.
Anyway, around December 1999, my husband and I decided to educate ourselves in alternative therapies, implementing our knowledge within our daughter, and found that we were progressing further than we had before with any doctor or medical product. When Aiesha said to me, "mummy, can I wear my new skin to school?" I decided to quit my career as an freelance IT consultant (boy do I miss those cheques!) and promote complementary medicine and therapies. 8 months later, Aiesha is a beautiful child with glowing cheeks (never had that before), smooth skin (with occassional flakes) and an incredible personality which just shines through. My whole life has changed. I believe that in life there are no accidents and that everything happens for a reason. If I had ichthyosis and had got "better" like Aiesha, I would have simply been happy with my improvement and got on with my life. However, because it happened to Aiesha, I am never completely satisfied, always learning more, talking to practitioners and doing what I can to "cure" Aiesha. I don't believe anyone should just have to live with ichthyosis or indeed anything else - every single body has the ability to heal itself. All we have to do is help it along. And I want to share everything I have learned, big or small, with all of you - hence the "Alternative Therapies" forum.
I think that's enough from me!

Warmest regards to you all,

Sonia.
Posted by: Anonymous

Re: Introductions and Life Stories - 09/07/00 04:32 PM

Hello, my name is Lisa I'm 33 years old and have EHK (epidermolytic hyperkeratosis) for those of your who want to know what it stands for. I'll explain what my skin looks like since I'm unsure what other forms look like. I have what looks to be very thick calloused hands and feet. Then every part of my body that flexes (elbows, knees, etc) has a milder for that looks like a rigid build up of skin and gets flaky as well. My skin is very fragile and can be knocked off with the slightest bump, this goes for the normal looking skin as well. My mother has the condition and I passed on the condition to my now 2 month old son. I was diagnosed with the condition shortly after birth, my mother was never diagnosed. I had genetic testing through GeneDx and found out at the 36 week of my pregnancy that my son would have the condition.
I have tried everything from viatimins, retinoids, Chinese homeopathic, to regular Vaseline. What works best? The Vaseline!
Right now I'm using Carmol 20 on my elbows and knees and Aquaphore on my hands and feet. As I got older some of the effected parts of my my body improved to normal looking skin. As a child like many of you I had a hard time which attributed to a low self-esteem. During college I finally felt a lot better and explained to people why my hands were so rough. While I was doing research for my BA in Sociology I found the FIRST website and was greatful to find out that there were more people than just my mother and I who had the skin problem. I grew up in Hawaii which is wonderful for this dry skin. But I'm here in hot dry Texas now because I married a wonderful man who is in the Army. We had our first and only child 2 months ago. I knew the risks of passing on the condition, but decided that I could deal with the fact that my child would have a 50/50 chance of getting the condition. He was born looking perfectly normal aside from his "dish pan hands). I think my need to have a C-section saved him from having his skin rubbed off during the birth process. Now diapers are a different story all together. The rub his skin off and create blisters. I've tried everything from cloth to different brands. Thanks to others on this BB I tried Huggies Supreme in a larger size and they work great. His skin still looks rubbed but no blisters. When I was born I was told that I had water blisters all over my body. Now I get them occasionally where clothes rub.
My current profession is as a case manager for juvenile delinquents. I guess I got into this field because I wanted to help kids after having a rough childhood of my own. I do enjoy the work however challenging it may be. I look forward to hearing more stories from others.

Lisa
Posted by: Diana Gilbert

Re: Introductions and Life Stories - 09/07/00 06:58 PM

Hello from Bermuda!!
Hi, my name is Diana Gilbert and I am 25 years old. I believe I have CIE, but I am not sure. I was born March 31, 1975 to Margaret and Llewelyn Hall. I have an 8 year old brother, Brian, who does not have ichthyosis. In Bermuda, ichthyosis is not too common, yet there are 2 people here who suffer with ichthyosis...When I was born the doctors here did not know what was wrong with me but after tests were taken and I was treated in England the diagnosis came back with Ichthyosis. My grandmother told me that her mother developed psoriasis at a late age, so it seems skin conditions run in the family. I used to use Emulsifying Ointment and Cream E45 as well as all sorts of soaps on my skin, but now I use All Purpose Gel (A "For You" product"" on my face and regular Suave Lotion on my body. I am trying the samples I got from the conference right now, but don't seem to be having much luck with them, even though the Nature Accents products seems to be working ok.
As I grew up with this disease I went through many obstacles...teasing from kids in school or other functions or just people being ignorant and making their own observations about what they thought I had, without asking.
But it was the courage and determination of my parents and other family members that helped me fight with this disease. I love them for standing by me through all the times when I really needed them. Like all girls at a young age, I thought that one day I would marry my dad, LOL, instead I married someone who is similar to my mom, LOL. I never thought I would ever get married until James came into my life permanently on July 12, 1997. It sure makes things a lot easier when someone is there who joins the family and makes life a little better. Thanks for being a part of my life, James. I love you always.
I try very hard to accept the way I am, but sometimes it can be difficult. But somehow I get through it..with the saying that my grandfather used to say before his passing, he would say..."Everythings gonna be okay". He was right...I just remember that thanks to the people I have met at the conferences, and the love I get from my family, friends, and co-workers that I can achieve anything I want in life. Thanks Guys!! I also read a lot of inspirational books that makes me realize that life is all about ups and downs.
I enjoy reading, partying and travelling. I have learned to express my feelings and not become stressed out, as that can make the ichthyosis worse. It is great to meet everyone at the conference and to share what I have learned with people around me so that they can understand what I am going through.
Thanks Laura & Chris for doing this website.
Thanks Les for getting me hooked up to ask and answer questions.
Love from Bermuda
Diana Gilbert
excalibur@ibl.bm
My parents email is brimarlew@northrock.bm

[This message has been edited by Diana Gilbert (edited September 07, 2000).]
Posted by: sofia

Re: Introductions and Life Stories - 09/09/00 01:08 AM

[img]http://www.ichthyosis.com/ubb/tongue.gif[/img] Hi everyone thought I share my life story with a happy note. I am so happy I met such wonderful people at the Philly conference. [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img] I feel like I am apart of a group who will make a difference with this battle we all face. I'll begin to tell you that I was born in 1972 to Greek parents who had no clue what I had.....At first I was red but as I got older (months older) my skin began to dry out on my knuckles. My mother tried many remedies including olive oil but to no avail I continued to dry up and become very itchy. As a baby my mother would ask ( even before I could talk) did I want to be scratched or patted on my back.. If I wanted to be scratched I would take my hand and nail and scratch the bed if I wanted to be patted I would pat my hand on the bed. When my mother tells me this it made me realize how much I must have suffered as a child. I can honestly say that I have blocked out all negative factors of my life the teasing, the intense staring, the dryness and itchiness....Every winter I try to remember what my skin looked like and I forget b/c I have learned to cope. I can tell that growing up was miserable but my adult years have been wonderful and beautiful. Meeting the man of my dreams and soon getting married...I have found that I have accepted this problem and I am in the process of finding new ways of maintaining it and hopefully curing it. I am teaching my self to use holistic remedies since Accutane was severe on my eyes...and will be trying new and innovating things (e.g what types of food to eat). I am in better shape today than I was a child and young adult. I am also very happy to find others who truelly understand how I feel..Especially in the morning when my skin is dry. [img]http://www.ichthyosis.com/ubb/frown.gif[/img]
I am blessed in many ways I have realized and I know that God gave me this to make a difference...and believe me when I say it has. I am more sensitive to the children who are teased and tormented and I find that I am going to these childrens rescue all the time. I know that one day we will find a cure and help all the people who suffer with ichthyosis. Thank You to all of you who I met at the conference for the new confidence and acceptance ..... [img]http://www.ichthyosis.com/ubb/biggrin.gif[/img]


[This message has been edited by sofia (edited September 08, 2000).]

[This message has been edited by sofia (edited September 08, 2000).]

[This message has been edited by sofia (edited September 08, 2000).]
Posted by: rjbrown

Re: Introductions and Life Stories - 09/13/00 05:52 AM

Hi. My name is Randy Brown, 50 years old with lamellar ichthyosis. My wife, Nancy, and I have been married 31 yr. We have three children and one grandson. none affected with skin problems. I work as a tool and die maker. Like most of you I grew up knowing little about my condition. Only 20 yrs. ago I found I had lamellar. Up till then it was called congenial ichthyosis. I found FIRST about 10 yrs. ago and through them. learned a lot about my condition. I grew up with much love and encourgement from all my family.While I endured stares and questions as I grew up, I think I was acepted for who I am rather than how I look. Am now taking 20 mg.Soriatane daily, very good results so far(just 5 months). I took Accutane for a while some years back but stopped when I had back pain. I enjoy your website and Board. I have learned some good information. Bye RJ

[This message has been edited by Laura Phillips (edited September 13, 2000).]

[This message has been edited by rjbrown (edited September 13, 2000).]
Posted by: Figaro

Re: Introductions and Life Stories - 09/20/00 05:51 PM

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
Posted by: Carly

Re: Introductions and Life Stories - 10/09/00 12:11 PM

Hiya, my name is Carly, and I am 18 years old from australia. I was born with ichthyosis form erythroderma, and later diagnosed with nethertons syndrome at the age of 10. The doctors did not think id live much past birth but i proved them wrong, and have gotten through primary and secondary schhol, and am well into a electronic commerce degree at university (which i hate, but thats another story).

School was hard, i got teased a lot, highschool may have been worse because I was excluded so much due to my appearance. But I gained a bit of respect too, which helped.

Last year, I got my first job, iwork at Kmart, and so far it has been good. of course, i get the odd comment about my skin, but I am usually quite polite about it.

My hair has been a problem, due to the netherton's syndrome, it has broken off a lot, at one stage i had many bald patches. It is shoulderlegnth now, the longest it has been ever. And the redness on my body has decreased with age, but it is still red on my face. I have take tigason too, but it did not react well with my body, i lost a lot of skin and weight. So I stopped that after about 3 months.

Socially, university is great, I am accepted and happy with my friends there. I have had a boyfriend too, he was very accepting of me, (but my vaseline did not do any justice for his acne, nor did my snowflakes of skin on his black t shirts!!) and being with him gave me a lot of confidence i never knew i had.

My parents found it difficult when I was younger, I was very demanding. i was hospitalised maybe 3 times a year, and this meant my mum would take a lot of time to stay in melbourne with me. They often find it more distressing to hear the comments and see the stares i receive, i seem tohandle it better than them. I was also taken to many doctors and conferences when I was a kid, but since the age of 15, I made up my mind i was happy enough and some of the "miracles" they offered just did not exist for me.

My motto is, "at least i am healthy on the inside, i could have a liver problem or something that is fatal...plus my skin will always grow back...lol...no matter how much i scratch!"

Carly
Posted by: trish

Re: Introductions and Life Stories - 10/25/00 05:01 AM

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%.
Posted by: Carmen Bare

Re: Introductions and Life Stories - 10/27/00 01:44 AM

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.
Posted by: Shane's mom

Re: Introductions and Life Stories - 11/07/00 12:04 PM

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.
Posted by: CJ

Re: Introductions and Life Stories - 11/11/00 01:15 AM

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.
Posted by: Lois

Re: Introductions and Life Stories - 11/16/00 01:27 AM

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!
Posted by: Janice

Re: Introductions and Life Stories - 11/18/00 02:28 AM

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
Posted by: Chandra

Re: Introductions and Life Stories - 11/20/00 09:18 PM

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).]
Posted by: jana

Re: Introductions and Life Stories - 11/21/00 05:45 AM

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

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Jana Gourley
Posted by: Francisco Viedma

Re: Introductions and Life Stories - 12/02/00 05:10 AM

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
Posted by: deb

Re: Introductions and Life Stories - 12/02/00 03:25 PM

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!
Posted by: Chandra

Re: Introductions and Life Stories - 12/06/00 10:27 PM

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.
Posted by: Ken Roberts

Re: Introductions and Life Stories - 12/30/00 08:24 PM

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).]
Posted by: Douglas

Re: Introductions and Life Stories - 01/04/01 12:53 AM

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...........
Posted by: Mark Waters

Re: Introductions and Life Stories - 01/09/01 02:15 AM

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
Posted by: allisen5

Re: Introductions and Life Stories - 02/02/01 04:44 PM

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
Posted by: sofia

Re: Introductions and Life Stories - 03/16/01 04:58 AM

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).]