LEONIA, NJ May 17, 2006 â€“ What would you do if you were diagnosed with a catastrophic disease, with no known cause or cure? Would you silently await your fate, or search the world over for a possible beneficial treatment?Jane Erickson knew what she would do â€“ despite her doctorsâ€™ protests and non-support. This Maplewood, NJ resident found new doctors and gathered family and friends around her who supported her desire to confront her scleroderma head-on â€“ and engage in the cutting-edge procedure of stem cell treatment, which may not be an avenue for every patient. These are stem cells harvested from her body, and are not embryonic or from a donor.
Jane met with the Leonia Walk Committee on April 18 to give testimony to her improving health. A year ago Janeâ€™s skin, like most scleroderma patients, possessed yellowish pallor and waxy, stretched smoothness. Janeâ€™s skin is now supple, with wonderfully pink cheeks!!! Whatâ€™s more? This retired high school choral music teacher recently received the results from her second echo-cardiogram, illustrating that her heart â€œis doing so well, that there is no pulmonary hypertension measured. That is a Very big deal!!! I can now wean off the $50,000 Pulmonary Hypertension Medication!! I will be 9 months [into stem cell treatment] on 5/3!!â€ [4/21/06 e-mail]
Meet JANE ERICKSON at the 4th Annual Stepping Out to Cure Scleroderma walk to be held in Overpeck Park, Leonia, NJ, on Sunday, June 4th. Registration starts at 9 a.m., and the walk, at 10 a.m.
June is Scleroderma Awareness Month, with the first Sunday saved for the annual New Jersey walk.
Scleroderma is an autoimmune, connective tissue disease generally classified as one of the rheumatic diseases. Though the exact cause is unknown, scleroderma is understood to affect the bodyâ€™s cellular walls with an overproduction of collagen, the â€˜glueâ€™ that keeps oneâ€™s tissue supple and elastic, and aids in healing. Sclerodermaâ€™s impact on the body can be mild to severe, with the bodyâ€™s largest organ â€“ the skin â€“ affected (diffuse), or major internal organs (heart, lungs, digestive system, kidneys), which may cause malfunction, shut-down, and death (systemic).
Though considered rare, since an estimated 300,000 people are affected in the U.S., sclerodermaâ€™s difficult-to-diagnose, difficult-to-treat symptoms affect a familyâ€™s complete way of life.
The 2006 Stepping Out to Cure Scleroderma walk occurs nationally through the Scleroderma Foundation, and is sponsored nationally by Encysive Pharmaceuticals,. Outreach for local sponsors for the Leonia Walk remains ongoing, and include Whole Foods, Audi/Volkswagen of Maplewood, Panera Breads and Diamond Rock water.
The Leonia Walk Committee of the Tri-State Chapter tackles different projects throughout the year, aside from the annual scleroderma walk. Its newest is the Patient/Doctor Brochure Project, which seeks to engage doctors who treat scleroderma patients to present this informative brochure so their patients can seek the education and support the Scleroderma Foundation provides.
Lucite holders, with roughly 20-25 brochures, and a cover letter addressed to doctors, underwritten by chapter Executive Director Rosemary Markoff and rheumatologist Dr. Michael Gross of Fair Lawn, comprise the package. All doctors in the New York metropolitan area who treat scleroderma patients â€“ rheumatologists, pulmonary specialists, cardiologists, gastrenterologists, internists, etc. â€“ are encouraged to contact Bruce Cowan at 201-934-8452 for the Patient/Doctor Brochure package.
The Scleroderma Foundation/Tri-State, Inc. Chapter is a 501(c)(3) non-profit corporation serving New York, New Jersey and Connecticut. Tri-Stateâ€™s three-fold mission is to promote the welfare of individuals and families affected by scleroderma, increase public awareness, and support scleroderma research. All donations are tax deductible. For further information, contact, toll-free, 1-800-867-0885.
To join the Tri-State Chapter for the Stepping Out to Cure Scleroderma walk, or to find out about local volunteering please contact Bruce Cowan at 201-934-8452, or, www.scleroderma.org/steppingout/tristate.htm.