"MIRACLE CURES"

In the field of muscular dystrophy treatment, as in cancer or any serious disease, there are occasional opportunistic doctors or other health practitioners who try to take advantage of the despair of parents or patients. A few may truly believe they have a cure or treatment for muscular dystrophy that no one else knows about or believes in, while others have purely self-serving motives.

How can you tell whether someone's treatment claims are reasonable? Claims by a doctor or other therapist that he's being persecuted, ignored or unfairly treated by the "medical establishment" are usually a tip that something is wrong.

Would doctors or agencies willfully ignore an effective treatment? It's highly unlikely they would do so, since the "medical establishment" would also stand to profit from an effective treatment -- and could be accused of malpractice for ignoring one. If a treatment is brand new, give the "medical establishment" a chance to evaluate it.

Health agencies like MDA have advisory boards composed of doctors who have every interest in serving the needs of their own patients and patients in general -- and who have their own reputations to protect. They're highly unlikely to advise agencies to ignore promising therapies in the interest of raising more money, as some miracle peddlers claim they're doing.

Another clue that all is not right is, of course, the miraculous claim itself. MDA recommends careful consideration before undertaking any treatment in DMD. The old adage, "If something sounds too good to be true, it probably is," is valid for medical treatment as well as for any other endeavor in life. If the claims lean toward the miraculous, be suspicious.

How can you check on a doctor's claims? Ask to see some articles he's written. Does the publication look credible? Who are the other authors writing in the same publication? By the way, an item on the Internet isn't the same as a legitimate journal article. The Internet isn't carefully regulated for accuracy, so double check any information you get from this source.

Perhaps even more important is talking to some people who've had this treatment. The practitioner should be willing to provide you with the names of some former patients and their telephone numbers.

If there's a doctor involved, you can contact the Board of Medical Examiners in your state to see if any problems have been reported in connection with the doctor or the treatment. Librarians can help you find these boards, as can the Internet.

If the therapist is another kind of practitioner, such as a chiropractor, get in touch with the state agency that regulates that form of practice. Again, ask your librarian for help, or use the Internet.

Next... CHAPTER 5: The Future—Research Points the Way