Hello Friends and Family,
You may be surprised when I tell you I'm planning to run another marathon. On October 18th my friend Mary Jo and I will be running the Nike Women’s Marathon in San Francisco, my first marathon since being diagnosed with Scleroderma in 2006. When Mary Jo and I entered our names in the lottery, I told her that if we got in, I would raise money for the Scleroderma Foundation. We got in and I am knee deep in training once again. I am sending you this letter because I would like to fulfill my pledge to support the Scleroderma Foundation and am asking for your help.
Back in September of 2006, I was having severe difficulty with the circulation in my fingers. Local doctors had no idea what was wrong. After lots of tests, I was fortunate to be referred to the University of Pittsburgh Medical Center where Dr. Thomas Medsger, a rheumatologist whose specialty is Scleroderma, finally diagnosed me. For the past 2½ years I have been going to Pittsburgh every 6 months to see Dr. Medsger so that he can monitor my progress and my medicines.
Many of you may not know what Scleroderma is. I certainly didn’t know until I was told I had it. Scleroderma is a relatively uncommon autoimmune disease that affects only about 300,000 people in the United States. It currently has no cure. This chronic disease causes skin to thicken, tighten, and build up scar tissue. It can also damage internal body organs. Luckily, my only manifestation is secondary Raynaud’s, which causes my fingers to turn purple due to poor circulation. Now you know why you see my with mittens all the time! I take 18 pills daily to help prevent my fingers from getting digital ulcers, which are very painful. That happened to me before I got medicine that was effective. In addition to all of the medication, I regularly need medical tests to monitor and prevent an attack on my organs. The drugs I take and some of the treatments I have had are quite unusual. Have some free time? Ask me about spending afternoons in a hyperbaric chamber.
So, why do I want to run a marathon with this illness?
1) For my health - One of the things my local doctor told me is exercise is one of the best things for me. What better way to exercise than to train for a marathon?
2) Its a mental thing - To show the disease it will not win; I can overcome it.
3) To help the Scleroderma Foundation raise money to find a cure - The research by doctors funded by the Foundation has produced the discovery of many of the drugs I take. Without the Foundation’s help, I would not be doing as well as I am.
The Scleroderma Foundation is a non-profit organization with a three-fold mission: support, education, and research. I have received the benefits of their work, and I want to help raise money to further their cause. I have not set a goal in fund raising (nor a marathon time goal) because of the tough economy and these difficult financial times. However, I would greatly appreciate whatever you feel you can donate to the effort to find a cure for this disease that can be so debilitating.
Thank you in advance for your support,
Erica