Colleen,
Thank you so much for replying back this is the 3rd time I've, been diag with a rare disease, and not be told by my Dr's. I end up finding out by getting copies of my medical reports or they appear on my medical charts. For the past 4 years I've going down hill pretty fast I'm only 58, I've been going back and forth with 1st pulmonologist and then my 2nd opinion pulmonologist over a diagnosis of Chronic Granulomatous disease which is another rare disease. Both of the pulmonologist refuse to give meva referral to a gentic counselor. I maybe not understanding how it all works to get help with these rare disease, but I do know that my body is suffering from not getting the treatment it needs. I've already lost two brothers and my father/mother from a heart condition, only my sister and I are left and I'm the oldest.
I'm in the waiting period of changing my Medicare advantgage plan to orginal medicare to be able to get into mayo. I've known about this situation for sometime but kept getting conflicting answers from the doctors here, I know my kidneys are suffering all ready and I'm losing hair like crazy, my eyes have dmg too. Is there anyone in the community that can help with question on how gentic testing works with your insurance ( Medicare) being under 65, & if you know of any members that have Chronic Granulomatous disease of the lungs? I appreciate what ever help you can give me Colleen will be greatly appreciated. Thank you so much God Bless L.