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.
(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).]