Ingegerd, thank you for sharing. I’m sorry you had to endure so many tests. But glad you are okay now. Did you go to the Mayo? Yes, Barrows is impressive but they function a bit differently than most places. You can get a second opinion for a flat fee of $100. I think you send them all your tests. Maybe you don’t actually have an on-site visit for that. You can get treatment there if it is one of the diseases they treat. All of this is creating lots of anxiety and I need to get on with it & just go with the flow! But if there is no cure for many of these diseases, I can’t help but to question my pursuit for answers. Gotta get some sleep now! Take care and rest well😴
I used to manage a nursing home for people with Huntington's Disease, which is a genetic disorder that affects about 50% of offspring. We also had a very well attended outpatient/allied health day clinic. At this time, no one had discovered the actual gene, so there was no living diagnosis, nor was there treatment. In trying to get everyone's DNA, so many families would say "But there's no cure, so why go through all this?" My answer was always that "One day there will be, and your family could be the one that springs open the final clue."
Well, it happened. The gene was found, and the cure is being developed.
SO, my comment (long winded as it may be) is NEVER to stop looking for answers. There may not be one now, but you could be the key that opens the final door. Put the anxiety aside and look at it as a search for mankind, for all the people like us that have the same thing. And stay positive.
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I used to manage a nursing home for people with Huntington's Disease, which is a genetic disorder that affects about 50% of offspring. We also had a very well attended outpatient/allied health day clinic. At this time, no one had discovered the actual gene, so there was no living diagnosis, nor was there treatment. In trying to get everyone's DNA, so many families would say "But there's no cure, so why go through all this?" My answer was always that "One day there will be, and your family could be the one that springs open the final clue."
Well, it happened. The gene was found, and the cure is being developed.
SO, my comment (long winded as it may be) is NEVER to stop looking for answers. There may not be one now, but you could be the key that opens the final door. Put the anxiety aside and look at it as a search for mankind, for all the people like us that have the same thing. And stay positive.
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