Natacha

It all started when I was eleven with a skin rash on the sides of my face and my shoulders...It was raised and burgundy and odd-shaped...It was also very itchy..My parents thought that I had used a dirty face cloth or touched something dirty...After a few weeks the rash didn't go away... Mom brought me to the doctors and he gave me cream. It didn't work. He sent me to a dermatologist who took skin biopsies which showed nothing. That doctor sent me to one of the top dermatologists at The Hospital for Sick Children who did skin biopsies, and found nothing. Every couple of months I'd see this doctor and she and her coleagues basically looked at me and whispered "Morphea" and "but the blood tests don't show...."

My father got fed up and decided that I wasn't going back because their cream wasn't doing anything and they hardly even spoke to us when we were there...A few months after that, which was almost a year after I started having the rash, my left hip swelled up, got red and I couldn't walk for a few days... By the time The Hospital For Sick Children (Sick Kid's) saw me, the swelling was gone, and so was the rash on my face...They took more blood, which showed nothing, and I didn't go back to them... On that visit though, I met a Rheumatologist who looked at what the dermatologist had and I heard the usual whispers of "Morphea", and "but the blood tests...". The Rheumatologist (call him Ron from now on) told my mother that if anything unusual happened, we should contact him... let's just say, we called alright...

Up until 1988, I was your typical active 12 year old... I was on the track and field team... I was a shot put queen!!! I was pretty decent at long distance running too.... It's just now that I look back at things, I realize that I may have been diagnosed earlier if I had paid better attention to...

My diary.... In my diary, I would write things that I felt were relevant to me that day... Can you believe that a year or two ago when I read my diaries from those years, I found myself writing "feeling unusually tired today" "...had a hard time raising hands to volley volleyball today..." "... legs feel weaker than usual..." "... can't seem to get %^&@@# basketball high enough!..." "...something's not right... better tell mom"

Things got worse when I was 13.... I went on a French exchange trip and when I was coming out of the car, I fell!!! I didn't have the strength to hold my body up... Also on this trip, I somehow fell off a motor cycle(my stomach muscles were weakening)... When I got home, I noticed things were getting harder to do... I turned 14 a few weeks later... I started to fall going up stairs, I couldn't get off the floor in the "normal" way... The final straw was in the October when I was at school doing cross country running, and I fell and chipped my tooth.... My mom called Ron, who saw me at Sick Kid's and said he would have to admit me...

In November I was admitted, was poked a prodded in every direction imaginable, had every test done, and a month and a half later, Ron came in my hospital room (In the middle of The Young and the Restless), started a speech and ended it with SCLERODERMA. Are you OK?" I was thinking "SCLEROIBEGYOURPARDON?"

Since then I seemed to get sicker and sicker... New developments would arise... I started to notice things that were always there, but I never took note of (hard stomach... food coming up... shortness of breath -a doctor told me it was asthma... turning blue... Fingers not straightening when in certain positions... etc..) the problems were endless... We won't even mention how weak I became....They put me on every med known....

I've had bone infections, muscle wasting (I also have Polymyositis), joint pain, you name it. Crazy thing is that the rash went away completely (go figure)

What made me so hard to diagnose was that Sick Kid's, which is the best in pediatrics, had only seen two(so I was told) cases of SD in youngsters.. I was the second, and was ten times more complicated than the first...They weren't too sure what to do with me so they tried everything!!! I was, in fact , a guinea pig...

At this point in the disease, I'm on CYTOXAN for my lungs,along with numerous other medications including the infamous Prednisone(what DON'T they treat with that!?) They just started the Cytoxan last month, I'm also on oxygen PRN...I have problems with my heart, esophagus , bowel , muscles, joint, hand, elbow and of course... Raynaud's.. Ya just can't be true SD without that!!! For some reason I have skin involvement now... After the rash that was it.. But in the past 3 weeks, I've noticed that I swell and the area gets harder to move.. I've also noticed that I "tingle". I'm not sure If it's the SD or the Cytoxan... It started about 2 weeks ago. My body feels as if someone rubbed me down in peppermint... So I feel hot and cold at the same time!!!!

What "saved me" was that with no skin involvement to this point, I was able to have a pretty successful career as an actress and I tried the modeling thing... The mega doses of prednisone put weight on in the beginning, but I dwindled down to 110lbs within a year of the stuff... I took advantage and got an agent!!!! My present agent still doesn't know about my condition... ...I Look pretty normal on the outside... My elbows bend a bit, but if I keep my hands clasped. It just looks like I'm trying to keep a ballerina's posture.. I've been called a snob for standing "like THAT"... If they only knew...

Before this last conflict with my lungs, I was basically as normal as I could possibly be (even with the lung collapses last year.) I felt pretty good about myself and where I was heading.. Or at least where I thought I was heading.... I had a positive outlook on things..... All these years I've fought with school, doctors, etc to give me a chance..

I felt I was proving to the world that I HAD SCLERODERMA, SCLERODERMA DIDN'T HAVE ME!!!! Well, scleroderma showed me... If you told me 2 months ago that I was going to need oxygen, possibly a transplant, and Chemo is the only thing that would have prevented me from dying I would have told you to take your prednisone, because you are obviously going in shock!!! I have to get a scooter to get around just so I don't aggravate my lungs... Ahh there are some ex boyfriends I need to run over (Things might be looking up after all)

1/23/01 - "I've been going through quite a bit lately. I'm not sure if I had mentioned it, but I'm waiting for a double lung transplant now. There are so many appointments to keep now that it's mind boggling! - Natacha"

6/11/01 - "Just want to let you know that I've been called in for some organs!!!! Pray for me, and keep me in your thoughts !! - Natacha"

This is being written on behalf of Natacha by us, her siblings (Rosemarie, Phil & Yvette). Unfortunately, the surgery did not go as well as we would have liked it to. Tasha, gave it her best. However, she lost the battle Friday, June 15, 2001 at 10.05 p.m.due to complications.

We would like to thank everyone for their love and support throughout the years.