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Rare Disease Day and Involvement
Autoimmune Diseases | Last Active: Sep 30, 2018 | Replies (5)Comment receiving replies
Dear oldkarl,my simple way of trying to help is this: the doctors have no backup help or coordination from any source to address this issue. Much is not known of how to address this issue. they would be sticking their neck out to be ridiculed or put down by all other medical practicioners. Who is keeping any and or all medical files on this condition?. Money wise, what could be gained with this knowledge? Quite a bit I suppose. I am just a layman so forgive any inadequate writings. i may have submitted. But, i am very, very curious as this could help many people with their sufferings.
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@peach414144 Hi, Peachy. You are right, of course. Who do you know, besides me, who keeps their hospital and clinic and lab records about their rare diseases? Because it is a rare disease (hATTRwt) I have even put it out there for folks to download and see, especially if they match some of my or other's symptoms, signs or markers. (https://bit.Ly/1w7j4j8 under "Amyloidosis Dossier) I even update it every few days, just to be as much help as I can. But guess what. I have passed it on to a dozen doctors, and only 3 that I know of have looked at it. I really do not know how to do a better job than this. Well, I guess one more thing. When I see a doc, I have along a thumb drive with my file on it, in .pdf, so they can have it then if they want it. I change the formate often, as I see things that could be done better. At least I have the experience of thinking through the matter, and at least making an educated guess and some help in the conversations with docs. And I have about 70 years of experience now to share.