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
http://www.inspire.com/groups/als-advocacy/

Amyloidosis Support Community
http://www.inspire.com/groups/amyloidosis/

CARES Foundation Support Community
http://www.inspire.com/groups/cares-foundation/

Charcot-Marie-Tooth (CMT) Support Community
http://www.inspire.com/groups/charcot-marie-tooth-cmt/

Ehlers-Danlos National Foundation Support Community
http://www.inspire.com/groups/ehlers-danlos-national-foundation/

Encephalitis Global Support Community
http://www.inspire.com/groups/encephalitis-global/

Fibromuscular Dysplasia Society of America Support Community
http://www.inspire.com/groups/fibromuscular-dysplasia-society-of-america/

LysoLife Community
http://www.inspire.com/groups/lysolife/

Myelin Repair Foundation Multiple Sclerosis Community
http://www.inspire.com/groups/mrf-multiple-sclerosis/

National Adrenal Diseases Foundation Support Community
http://www.inspire.com/groups/national-adrenal-diseases-foundation/31

National Fabry Disease Association Support Community
http://www.inspire.com/groups/national-fabry-disease-foundation/

National Organization for Rare Disorders (NORD) Support Community
http://www.inspire.com/groups/rare-disease/

Nephrotic Syndrome and FSGS Support Community
http://www.inspire.com/groups/nephrotic-syndrome-and-fsgs/

Neurofibromatosis, Inc. Support Community
http://www.inspire.com/groups/neurofibromatosis-inc/

Organic Acidemia Association Support Community
http://www.inspire.com/groups/organic-acidemia-association/

Pseudomyxoma Peritonei (PMP) Support Community
http://www.inspire.com/groups/pseudomyxoma-peritonei-pmp/

Scleroderma Foundation Support Community
http://www.inspire.com/groups/scleroderma-foundation/

Stop Sarcoidosis Support Community
http://www.inspire.com/groups/stop-sarcoidosis/

Tuberous Sclerosis Alliance Support Community
http://www.inspire.com/groups/tuberous-sclerosis-alliance/

United Leukodystrophy Foundation Support Community
http://www.inspire.com/groups/united-leukodystrophy-foundation/

VHL Family Alliance Support Community
http://www.inspire.com/groups/vhl-family-alliance/

Wilson Disease Association Support Community
http://www.inspire.com/groups/wilson-disease-association/

 

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“… 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.”

Interesting.