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Important Notice: The Hanford Health Information Network (HHIN) closed in May, 2000. HHIN Web pages are provided as archived information only, and are not currently maintained. Information contained on the HHIN Web pages may be out-of-date. Current information is available through the Hanford Community Health Project, which is updated by the Agency for Toxic Substances and Disease Registry of the U.S. Centers for Disease Control and Prevention.
The Newsletter of the Hanford Health Information Network
Radiation Science Update:
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COPING |
Rebecca Leonard lived in The Dalles, Ore., from 1953 to 1957. Her family ate fruit and vegetables from their garden and fish from the Columbia River. She has hypothyroidism and scleroderma. We asked about her experiences in choosing health care.
Responding are two naturopathic physicians, Debra Clapp, N.D., and Ralph Wood Wilson, N.D., M.S. Acupuncture; and a primary care physician, Suzanne Staudinger, M.D.
Rebecca: It's difficult to find a doctor that truly knows about scleroderma and how to treat it. When you mention "Hanford downwinder," doctors look at you like you are nuts or want to sue someone. Where would you find a doctor that knows about this condition? How would I find others with this condition?
Drs. Clapp and Wilson: You deserve respect and attention from your caregiver. Scleroderma is one of many connective tissue diseases, possibly with an autoimmune component. These are not well understood.
Different types of health care providers take significantly different approaches to health and disease. You might like a team approach. Holistic practitioners (naturopathic doctors, acupuncturists, Chinese herbalists, homeopaths, etc.) do not see all scleroderma patients as the same, and will tailor the therapy to your experience. Interview several about their training, diagnostic methods, therapies and time spent with patients. Would they cooperate with a diverse team? Ask about their experience with your diseases and how they would approach your situation.
Naturopaths (N.D.) use nutritional, herbal and other therapies to support connective tissue integrity and the immune system. N.D.s strive to maximize health as well as relieve symptoms, in part by correcting imbalances that may have contributed to your disorder. A computer search of natural medicine databases shows therapy combinations that can be tailored to a scleroderma patient.
The main radionuclide released from Hanford was radioactive iodine. Because the thyroid concentrates iodine, it is thought to be most at risk, although other sites may be at risk. Health history, physical exam and lab/diagnostic tests help detect abnormalities at early, treatable stages. Many N.D.s treat hypothyroidism and can provide care for cancer patients to decrease side effects of chemo- and radiation therapy and to maintain viable immune function.
Dr. Staudinger: I can imagine that you had trouble finding a doctor to answer all your questions. Because scleroderma is uncommon, not all doctors are familiar with it.
Scleroderma is a disorder in which the body's connective tissue becomes very thickened. It can affect the skin, blood vessels, lungs and kidneys. Patients who just have involvement of the skin usually consult with a dermatologist. If internal organs are affected, you would want to see a rheumatologist (specialist in the musculoskeletal system and joints) in addition to your primary care doctor.
In some areas, your county or state medical society or a community hospital may be able to refer you to a specialist in your area. Or try contacting a national group. For example, there are national organizations for scleroderma patients (see selected resources below). HHIN may be able to help you locate a support group or connect you with other downwinders in your area.
Another option is to ask your primary care doctor if he/she is interested in becoming your "expert" about the health effects of living downwind of Hanford. You could help by sharing information you have found (such as HHIN's health care provider packet) and letting your doctor know how to stay updated. If your doctor doesn't feel comfortable doing this, respect that decision and keep looking until you find a doctor who is interested. They do exist!
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National Organization of Rare Disorders, Inc. (NORD)
Networking Program connects families having the same diagnosis.
Reports (at a nominal charge) and Web site offer disease information, list support organizations and other services.
NORD, P.O. Box 8923, New Fairfield, CT 06812-8923, 1-800-999-6673;
Web site: http://www.rarediseases.org/
Specific disease organizations
Search on the Internet. For example, the Scleroderma Federation, Inc. (1-800-422-1113) makes referrals to doctors and has support groups.
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