Dilated Cardiomyopathy (DCM) sj: tes forsythias à toi!

IMPORTANT: This page is currently without a Webmaster. However, the most important function is being handled by our e-group. Sign up and introduce yourself. Your experience is valuable to all of us! You will be able to communicate with each other, and also check the archived postings. It's a great resource... if we use it!!!

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We Can Help Ourselves!

Do you remember the mysterious disease that suddenly killed Hillary Whitney (the girl about whom Bette Midler sings "You are the wind beneath my wings" in the movie "Beaches")? Recently a good friend of mine lost her father to this same disease, and shortly afterwards her brother was also diagnosed as having DCM. At the time, we were taken completely by surprise: who ever heard of such a thing? Considering how common and how devastating the disease is, you don't read much about it in the press. Even in "Beaches," little was explained.

More recently Detective Bobby Simone, a character in the popular television series "NYPD Blue," died of what was apparently cardiomyopathy. The diagnosis wasn't been stated, but the symptoms and the mention of "ejection fraction" seem pretty conclusive. It will be interesting to see if such a prominent case, even though fictitious, has the effect of raising more attention and greater resources to cardiomyopathy.

This page is intended as a resource for all victims of the disease: to provide support and information on current research and treatment.

The most important thing is to turn up the volume. Get in touch with each other! Start with those survey respondents who specified that they wished to be in touch with others. Read through all the old bulletin board listings. Everybody says he wants to hear from others, but I wonder if anybody (other than Lydia!) is actually taking the first step.

And maybe its getting to be time to take this disease public, to lobby for more research money and more effective dissemination of research results. Does anyone even know how many cases there are? Maybe its time for a national march.

Many doctors seem to have trouble keeping up on advances in diagnosis and treatment of cardiomyopathy; by sharing our information, we have a better chance of profiting from recent advances. At the same time, we may improve our own and each others' morale -- a significant factor in dealing with this debilitating disease.

Please read through the messages posted on the Bulletin Board , contact each other, and stay in touch. Also, we now have a chat facility. You can post your suggested discussion times (GMT!) in the Guestbook.

Where do we go from here?

Induced heart attack used to treat cardiomyopathy! What is Cardiomyopathy? (Concise textual introduction) Online Resources Check this site! Heart Information Network Q&A: (Try: cardiomyopathy, myocarditis, Batista, transplant) Some leads on canine DCM

Bulletin Board, Vol. VII (From Guestbook and E-mail; updated July 24, '01) Bulletin Board, Vol. VI (From Guestbook and E-mail;) Bulletin Board, Vol. V (From Guestbook and E-mail) Bulletin Board, Vol. IV (From Guestbook and E-mail) Bulletin Board, Vol. III (From Guestbook and E-mail) Bulletin Board, Vol. II (From Newsgroups) Bulletin Board, Vol. I (From Guestbook and E-mail) Guest Book Cardiomyopathy Survey Cardiomyopathy Survey Responses (Updated May 11, 2000; 59 cases)

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