Parents spread word of son’s illness — amyloidosis

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DEAR DR. DONOHUE: Our son fought amyloidosis, which took his life on Oct. 10, 2009. We hope you make this disease a topic for a column. Our family’s mission is to aggressively spread the word and hopefully save lives. We are meeting with the director of the Amyloid Treatment and Research Program from Boston University Medical School and the Boston Medical Center. He would be appreciative of your interest in reporting on amyloidosis. — J.S.

 ANSWER: My sincerest sympathy to you and your family on the death of your son. It’s difficult to imagine a greater sorrow than the death of a child. My best to you in spreading the word on amyloidosis.

 It’s an unusual illness. The body makes a strange kind of protein that infiltrates tissues and organs and interferes with their functioning. The heart (as in your son’s case), kidneys, liver, adrenal glands, thyroid gland, nerves and the pituitary gland are potential targets. The array of possible symptoms, therefore, is great. Sometimes amyloidosis is seen in conjunction with other conditions, like the cancer multiple myeloma and rheumatoid arthritis.

 The kidneys are the most frequently targeted organs. Signs of that happening are the appearance of protein in the urine and fluid retention.

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 The heart is second on the list of involved organs. It’s unable to pump blood, and heart failure is a consequence.

 Since the presentation of amyloidosis can be quite confusing, it should be considered in patients with large amounts of protein in the urine, patients with large hearts or patients with liver malfunction when no cause can be found for these abnormalities. Biopsy provides the best evidence of amyloidosis, and biopsy of abdominal fat is a simple way to obtain suitable tissue for microscopic proof.

 I hope such a brief exposure introduces people to this illness and to the wonderful work on it being done at Boston University Medical School and the Boston Medical Center.

 DEAR DR. DONOHUE: I have congestive heart failure. I see ads for EECP, enhanced external counter pulsation, as a remedy for it and other heart problems

 I’ve never read any literature on EECP and would appreciate your opinion. It doesn’t seem widely used. — L.S.

 ANSWER: Enhanced external counter pulsation is used mostly for the treatment of angina — chest pain due to clogged heart arteries. The pain comes on when a person is active, stops when the person rests and returns when activity resumes.

 Three inflatable cuffs are wrapped around the legs — one at the calves, one at the lower thigh and the third at the upper thigh. The cuffs are programmed to inflate when the heart is filling with blood and to deflate when it’s pumping blood. They do so in sequence from bottom to top. This squeezing action propels blood back to the heart and the heart muscle, increasing its nourishment.

 The procedure takes about an hour. A total of 35 sessions spread over seven weeks is the standard treatment schedule.

 People with angina that doesn’t respond to the usual treatments have obtained improvement with this technique. It can be used for heart-failure patients, too. It’s considered when more-standard methods are not yielding satisfactory results. Make sure that your insurance covers this therapy.

 The booklet on congestive heart failure explains this common malady and its various treatments. Readers can obtain a copy by writing: Dr. Donohue — No. 103, Box 536475, Orlando, FL 32853-6475. Enclose a check or money order (no cash) for $4.75 U.S./$6 Can. with the recipient’s printed name and address. Please allow four weeks for delivery.

Dr. Donohue regrets that he is unable to answer individual letters, but he will incorporate them in his column whenever possible. Readers may write him or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Readers may also order health newsletters from www.rbmamall.com.

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