Swimming star symptom free after diagnosis of scleroderma

When Cheryl Ferguson's daughter was diagnosed last year with scleroderma, an incurable disease, she wasn't satisfied with the treatment the doctor prescribed.Instead, Ferguson, a Loomis resident, became an advocate on her daughter's behalf spending countless hours on the computer investigating a variety of Web sites until she discovered an alternative method she felt would better treat her daughter's illness that was offered on the other side of the country. Today her 17-year-old daughter, Jessica, is symptom-free."It all began Nov. 2005 the day after Thanksgiving and we were up in the mountains cutting our Christmas tree," Cheryl Ferguson recalled. "It was a very cold day and Jess' hands went numb and one finger turned totally white."A family member, who is a nurse, identified the white fingers as Raynaud's Phenomenon, a medical condition that often exists on its own but is also frequently the first symptom in many autoimmune diseases such as rheumatoid arthritis, lupus and scleroderma."At first I thought I was just too cold," Jessica Ferguson said."We weren't really too worried because it was just one finger," her mother added.Within a few weeks Jessica Ferguson's hands were white. They also tingled and she was often in pain. But at 16 years of age, Jessica Ferguson said she really didn't think much was wrong. She continued her practices and workouts with her competitive swim team and the school team at Del Oro."I even brought a Thermos of hot water to the pool that I would pour over my hands," the Del Oro graduate said. "But then it became so frequent, even that didn't help." After a few months experiencing these annoying symptoms was beginning to take a toll on this fifth-generation Loomis resident who had been competitively swimming since she was 8 years old. Prior to becoming ill Jessica Ferguson swam with the Del Oro varsity swim team, earning the Most Valuable Player award three of her four years while attending the school. She was also a two-time top competitor on another swim team that traveled to the Olympic Training Center in Colorado to train.It was during the second training in March 2006 when Jessica Ferguson began to experience extreme fatigue and shortness of breath. After a pulmonary function test showed her lung diffusion capacity at 61 percent, Jessica Ferguson was diagnosed with systemic scleroderma in May 2006.Systemic scleroderma is a chronic disease that causes skin thickening and tightening and can involve fibrosis and other types of damage to internal organs. There are 75,000 to 100,000 cases in the United States and 75 percent of the patients are women. There is no cure for scleroderma; although its progression can be slowed down, the prognosis for patients with systemic scleroderma is five to 10 years. Jessica Ferguson's local physician prescribed a therapy of methotrexate, a chemotherapy drug that hopefully would slow down the disease's progression.Even after her diagnosis, Jessica Ferguson said she didn't think too much about what doctors were telling her, as it was her way of dealing with the seriousness of her condition."I was in denial," she said.Fortunately for Jessica Ferguson, her mother wasn't feeling that same way and decided to take matters into her own hands by researching the disease on the Internet."Most of what I read was terrifying," her mother said. "But I never thought I would stumble on a treatment that Jess' doctors had not told us about, let alone a treatment with potential for reversing the symptoms and the hope of a normal, healthy life."Cheryl Ferguson found a Web site for the Road Back Foundation at www.roadback.org. that is an international foundation that promotes patient awareness of antibiotic protocol for rheumatic disease. She discovered a doctor from Harvard University, Dr. David Trentham, who had found success in more than 80 percent of the scleroderma patients he treated.Even though her doctors in California told her Trentham's treatment was a hoax, Jessica Ferguson and her family flew to Boston on July 4, 2006 to learn more. "We saw a fireworks show that night, an Independence Day we will never forget," her mother said. Dr. Trentham had confidence Jessica Ferguson would fully recover with the use of minocin, an antibiotic commonly used to treat acne.Jessica began the antibiotic in July 2006 and by the fall she was back to full-time practice with her swim team, the Sierra Marlins. This past spring she was swimming her lifetime best times in some events. She will remain on minocin therapy for at least a few years but so far, none of the scleroderma symptoms have returned.In just a few weeks Jessica Ferguson will head to San Diego where she will be a freshman at the University of California, San Diego, competing on the National Collegiate Athletic Association swim team."I feel like I'm past the whole ordeal," Jessica Ferguson said. "But it changed me a lot. I learned not to take things for granted and how important getting enough sleep is for me."