Hello. Yes, thanks, and I'm familiar with many others that have gotten the same generic denial letters in recent years too. I've been dx with some things since my teens, but things are vastly worse now, was denied even when the U of MN tried referring me a couple years ago. Someone from patient experience is supposed to be looking into this, but it's just absurd that for years, other clinics have refused to consult with us for a genetic condition that I would never in a million years want to pass on, and is by far the most debilitating out of every disability I have. Yet no one will even validate it. I already deal with discrimination in the workplace, it shouldn't be this way in seeking proper treatment and respect in healthcare either.

And I know it's a patient connect site, but if there's anyone that can get thru to all the other health care systems, those that have geneticists on staff for example, that refuse their services for certain things, but refer to Mayo, and still do not offer actual care after we're denied again, well, we are not so rare, and would help So many people. This is old news by now, we need a geneticist dx for CCI surgery out east, for a better chance at disability, even to be heard, or taken seriously. It's definitely survival of the fittest out there. Thanks for offering these discussion boards. Hope someone with the power to promote positive change sees it.