Scleroderma, What Scleroderma?

Jessica Ferguson

Diagnosis: Systemic Scleroderma

It was the day after Thanksgiving in 2005.  My family and I had gone up to the mountains as we have done every year on this day to cut down our Christmas tree.  It was close to freezing temperatures and I had been bundled up in a warm jacket and gloves but I was still cold.  I took my gloves off so that I could help my dad carry our sixteen-foot tree down the hill.  When we finally set the tree down, I looked at my hands which were sticky with sap and partly numb from being so cold and saw that my right index finger was completely white.  From just below the middle knuckle to the tip of the finger, it looked like a corpse.  That was the first sign of a series of events I could never have anticipated.

Before I continue with my story, I will give you a little bit of background information on myself.  I am from a small town near Sacramento, California and I am currently eighteen years old.  Proceeding the winter of 2005 I had been a dedicated competitive swimmer, training over twenty hours a week year round.  I had been to meets all over California, Arizona, and training trips at the Olympic Training Center in Colorado Springs.  I was at the Junior National level and could have been well on my way to Nationals in the coming year.  I was also an A student and through high school had over a 4.0 GPA.  At that time life could not have been better, but it turned out it quickly became significantly worse.

I was diagnosed with Raynauds Phenomenon and had to deal with the constant struggle of keeping my hands warm.  I also saw a local rheumatologist whom, with results from the blood work, confirmed that I could likely develop some type of rheumatic disease.  I tested positive for high rheumatoid factor and high anti centrimere pattern.  During this first appointment with the rheumatologist I was told that this indicated I may develop a rheumatic disease, of which the only ones that I had ever heard of were Lupus and Rheumatoid Arthritis. The Rheumatologist told me that these diseases would typically not appear until my late thirties or early forties.  So for the time being I was instructed to not let myself become extremely cold and to come for a follow up appointment in a month.

By February my Raynauds had worsened dramatically and I started to develop ulcers on the tips of my fingers.  The ulcers would not heal and they were even burned off twice  by two different doctors who were confident that they were warts on the tips of my fingers.

Over the next few weeks the finger ulcers only got worse; soon I was not able to straighten my fingers because of the contractures and swelling.  I had trouble doing everyday tasks like typing on the computer; I had to resort back to the method of hunt and peck typing because I could not use half of my fingers.  I could hardly hold a pencil, I opened doors and grabbed items with the knuckles of both hands, and I had to hold a fork with my thumb and my knuckles because I could not grip anything with my fingers.  It was hard to button my jeans in the morning and zipping up a jacket was nearly impossible.  I continued swimming but practices were inefficient with so much time taken up by sitting on the wall to warm my hands. 

Spring break in April 2006 is when my health started plummeting even further down hill.  I started feeling very fatigued and was short of breath after doing simple tasks.  I would have to sit down after walking up a flight of steps in my own house.  Many days I had to come home from school early just to get more rest even after I had gotten over ten hours of sleep the night before.

I was officially diagnosed with Systemic Scleroderma on May 24, 2006.  I got to the point that I could not even swim a couple laps of warm up at a slow pace without getting out of breath.  At swim meets I suddenly began swimming slower than I had swam since I was twelve.  I would finish races an entire lap behind the swimmers I would normally have been able to keep up with, possibly even beat.  I tried to keep doing all my normal activities because I did not want anything to impact my life. 

I was almost at the point where I never had enough energy to do anything except sleep; however, I am fortunate enough to have a mother that has now become a master with the internet and the resources it has to offer.  After hundreds of hours of research and investigating possible treatments, she stumbled upon the Roadback Foundation and learned about the Antibiotic Protocol.  We booked our flights for Boston, Massachusetts and were able to see Dr. T on July 5, 2006.  I was able to start the Minocin treatment that day.  Within three weeks my finger ulcers had healed and I was able to straighten all of my fingers.  I felt like I had regained all my energy and strength in just over a month.  By December, I was back to full competition, over this past summer, I swam many lifetime best times.  I finished up high school at the top of my class.  I even had the energy to work as a lifeguard and swim instructor this past summer.

I am currently beginning my freshmen year of college at the University of California, San Diego, and studying molecular biology.  I am also on the school NCAA Division II swim team where I am again swimming over twenty hours a week.  I am still taking the Minocin but my only symptom is mild Raynauds.  It was a miracle in so many ways.   Thanks to AP and the Road Back Foundation for publicizing the potential of AP, I now have my life back.

Jessica Ferguson

jferguso@ucsd.edu

9/30/2007