Archives for the month of: February, 2012

In celebration of all those waging war on rare disease, a quote from the past: “Rare things happen to special people.” Hopefully, that sentiment will raise your spirits as it did mine.

Please take a moment to explore the following Inspire rare disease communities in recognition of World RARE Disease Day, February 29.

ALS Advocacy Support Community

Amyloidosis Support Community

CARES Foundation Support Community

Charcot-Marie-Tooth (CMT) Support Community

Ehlers-Danlos National Foundation Support Community

Encephalitis Global Support Community

Fibromuscular Dysplasia Society of America Support Community

LysoLife Community

Myelin Repair Foundation Multiple Sclerosis Community

National Adrenal Diseases Foundation Support Community

National Fabry Disease Association Support Community

National Organization for Rare Disorders (NORD) Support Community

Nephrotic Syndrome and FSGS Support Community

Neurofibromatosis, Inc. Support Community

Organic Acidemia Association Support Community

Pseudomyxoma Peritonei (PMP) Support Community

Scleroderma Foundation Support Community

Stop Sarcoidosis Support Community

Tuberous Sclerosis Alliance Support Community

United Leukodystrophy Foundation Support Community

VHL Family Alliance Support Community

Wilson Disease Association Support Community



“… you can still wear a pretty blouse.”

These words were spoken by a gentleman cardiologist on a mind-bending afternoon at the Cardiovascular Technology Conference. To me, they generalize the lack of understanding many women experience as heart patients.

It all began with male and female cardiologists. In several different presentations, the speakers made reference to the idea that off-pump bypass was preferable for “a better cosmetic result.”

Back it up. Are they saying what I think they’re saying? That all we women-folk care about is a plunging neckline?

I reprogrammed my ears and tried again. Nope. The remaining speakers expressed the same concept. Off-pump or beating heart bypass offered the benefit of superior cosmetic result. No mention of reduced pain, stress, and potential complications during recovery.

Not a single cardiologist or surgeon mentioned improved PHYSICAL outcomes. It was all cosmetic.

Later, when a cardiologist attending the conference stopped at the WomenHeart information booth, I brought the topic up. It was so interesting, I suggested, that the speakers viewed women’s sole concerns as superficial, not physical. I explained I’d had bypass and ended up with two additional surgeries to complete a sternal closure because of complications.

He gestured to the scar peeking out of my neckline and said, “Well, it looks good.”

I attempted to drive my point home: “But think of the extra recovery time, not to mention medical expense and anguish, involved with a sternotomy.” I added it was surprising not one single doctor had mentioned these benefits to off-pump in the earlier talks.

My query fell on deaf ears. “Well, you can still wear a pretty blouse.”