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#56 - 08/29/00 03:04 PM Introductions and Life Stories
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
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).]

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#57 - 08/30/00 01:08 AM Re: Introductions and Life Stories
Anne Offline
Member

Registered: 08/12/00
Posts: 19
Loc: Connecticut
I guess I will be the first one to introduce myself

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#58 - 09/05/00 04:34 AM Re: Introductions and Life Stories
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
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
_________________________
Les Avakian

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#59 - 09/05/00 05:24 PM Re: Introductions and Life Stories
sonia Offline

Member

Registered: 08/22/00
Posts: 77
Loc: United Kingdom
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.

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#60 - 09/07/00 04:32 PM Re: Introductions and Life Stories
Anonymous
Unregistered


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

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#61 - 09/07/00 06:58 PM Re: Introductions and Life Stories
Diana Gilbert Offline
Member

Registered: 09/05/00
Posts: 14
Loc: Hamilton, Bermuda
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).]

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#62 - 09/09/00 01:08 AM Re: Introductions and Life Stories
sofia Offline
Member

Registered: 08/14/00
Posts: 53
Loc: Little Neck, New York , Queens
[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).]

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#63 - 09/13/00 05:52 AM Re: Introductions and Life Stories
rjbrown Offline
Member

Registered: 08/23/00
Posts: 39
Loc: henderson,ky,us
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).]

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#64 - 09/20/00 05:51 PM Re: Introductions and Life Stories
Figaro Offline
Junior Member

Registered: 09/20/00
Posts: 1
Loc: Sweden
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

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#65 - 10/09/00 12:11 PM Re: Introductions and Life Stories
Carly Offline
Member

Registered: 10/02/00
Posts: 86
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

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