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This is just a brief overview of the disease.  If you would like more information please go to :


scleroderma.org


Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.


Scleroderma is not contagious, it is not infectious, it is not cancerous or malignant.


The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.


There are an estimated 300,000 people in the United States who have scleroderma, about one third of whom have the systemic form of scleroderma. Since scleroderma presents with symptoms similar to other autoimmune diseases, diagnosis is difficult and there may be many misdiagnosed or undiagnosed cases as well.


At the present time, there is no cure for scleroderma, but there are many treatments available.

This blog entry is in response to a few grumbles that I’ve overheard about me racing sport class downhill and winning my races.

 

THIS IS NOT A “WHOA IS ME” ENTRY, NOR IS THIS AN EXCUSE. I FEEL THAT I SHOULD EXPLAIN WHAT HAS HAPPENED IN THE LAST 2 YEARS.

 

**I apologize in advance if this is long. I want to put as much information into this blog entry.

 

2005: After entering a few downhill races and podiuming, I figured I would give racing a go for the 2006 season.

 

At the end of the 2005 season, I started noticing that my hands were very stiff and hurt so much that it kept me up at night.

 

I figured I had carpel tunnel syndrome but I just soldiered on and attempted to ignore it.

 

2006: I had high hopes for the ’06 downhill race season. I was getting support from several sponsors and my family.

 

I found that my hands as well as all my joints were very stiff and hurt so much that there were days when it hurt to walk.

 

I couldn’t train as my hands hurt and I had crashed a few times because my hands would not open and I could not apply the brakes.

 

I grumbled all the way to the doctor’s office. The doctor initially thought I had carpel tunnel syndrome. A few more tests and a specialist later revealed that I did not have carpel tunnel syndrome.

 

More tests…and in June of 2006, just a month shy of my 30th birthday, I was diagnosed with scleroderma. 

 

I was devastated. I was alone in the doctor’s office and was told that I have a disease that is life threatening and that THERE IS NO CURE.

 

I was prescribed methotrexate. This is a chemotherapy drug. Yes, a chemo drug.

 

At the time, I was approximately 190lbs, with an average body fat of 5-7%. I lost 15lbs but I still kept the body fat percentage, as I was able to ride my road bike and run.

 

At the end of the season, I was ready to sell my bikes. I was going to give up but I put my trust in the treatment and support of my family.

 

I only raced 4 times and each was torture. I had bumped up to expert class and could not keep the pace like an expert should.

 

 

2007: I had been taking my medications for several months and at the beginning of the season, I began to train hard.

 

I put my miles in on my road and trail bike. As I said above, I was 15lbs lighter and on the bike, I felt it immediately. I felt faster on pedal sections, I actually loved climbing on my road and trail bikes. 

 

I saw immediate improvements in my downhill riding. While on the bike, I was able to move around and adjust position more, pedal out of turns harder and faster and I wasn’t carrying the extra weight so I was able to skip across rock gardens instead of plowing through them.

 

My hands still hurt but the pain was manageable as I learned how to live with it and the treatment I was receiving.

 

So far the 2007 season has been good. My confidence is back and I’ve placed first in every race I’ve attended except for one. I picked the wrong line in my race run and crashed, putting me in fifth but I was still on the podium.

 

The 2007 season is almost over but I have high hopes for 2008. I am very confident that I will see even more improvements in 2008.

 

I have decided that I will step up to expert class and even though I know it won’t be easy, it will be fun and that’s really what this whole thing is all about.