Dear Alice,
I have a kidney disease which my doctors have been unable to diagnose. Where is a good place
to look for some help? My doctors have told me it is nephrotic syndrome, but they don't know
what is causing it. Can you help?
Alice has some information that your doctor may not have provided you. Nephrotic syndrome
refers to a number of signs and symptoms resulting from damage to the filtering mechanisms
(glomeruli) of the kidneys . This condition causes an extreme loss of protein from the
bloodstream. This loss results in edema, or fluid retention. As far as its causes, nephrotic
syndrome may result from diabetes mellitus, an inflammation of the kidney filters mentioned
above, or from the accumulation of an abnormal protein in the organs and tissues. High blood
pressure, reactions to poisons-particularly lead carbon tetrachloride and poison ivy, and bad
reactions to drugs can also cause this illness. Symptoms include swelling and fluid collection in
the face, legs, chest cavity and abdomen. Diarrhea, lethargy and anorexia can also occur.
Treatments are usually directed at the underlying condition-among them may be a low-sodium
diet and diuretic drugs to reduce swelling.
Alice reminds you and others who may be diagnosed with an illness about your rights as a
patient to receive information for which you are paying. In other words, ask your care providers
questions. If you don't understand their answers, or you want more information, request
explanations in simple language that people without medical backgrounds can understand. Ask
for other resources for information. For example, the National Kidney Foundation (800-622-
9010) provides information, brochures and referrals on various kidney disorders. Many public
libraries have a wealth of information on health issues so that you can educate yourself while
receiving treatment from professionals. And, since you already access the Internet for
information, try searching for on-line resources using "kidney" as your key search term.
- Alice