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I Have A Dream- It Involves The Lottery ....


juliegee
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For those of you in the states, have you ever seen those Cancer Care Centers of America TV commercials? You know, the ones that offer late stage or complex cancer patients HOPE. I LOVE their comprehensive, patient-centered, immediate, get-down-to-business approach. I LOVE how all of the caregivers meet with the patient at one time...instead of having exhausted, deathly ill patients trek all over town, chasing one doc after another only to find little or no help. Wouldn't it be wonderful if WE had something like that?

...A place where we could meet with an autonomic specialist, an exercise physiologist, a nutritionist, a supportive psychologist, and ANY other specialist we need- geneticist, connective tissue, mast cell, rheumatologist, endocrinologist, mitochondrial, nephrologist, GI, etc. AND, they ALL "get" how their specialties interplay with dysautonomia. A place where we were treated respectfully and believed. A place where we received prompt help and didn't have to wait years for a DX...

:D Gotta go buy a lottery ticket now.

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:). I got to sit in on a meeting where the goal was to try to develop a comprehensive treatment center for patients with neuroendocrine tumors (like my mom's carcinoid syndrome). The problems we encountered were:

- the real experts on the disease are already too busy to designate clinic hours at a location other than their current facility

- anyone less than an expert only made the patient care experience less successful

- getting experts from each discipline in the same location was also impossible

I think I should have bought a lottery ticket that day. I would have had better luck than trying to put together this center!

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It's WONDERFUL that you even tried to accomplish that for your Mom and other patients, Janie. I know the obstacles exist. I also know that they can be overcome with enough $$$.

It's just a really groovy dream for now B) ...till I win.

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Yes, a Dysautonomia Treatment Center of America would be great! I will never see that commercial the same way again now. It is so exhausting going from specialist to specialist, but no choice with the variety of symptoms and body systems affected by this. One place would be nice... we can dream. :rolleyes:

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