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Fevers and diagnosed with Telomere Disease by NIH
I am new to this forum and glad I found it. I have been diagnosed with Telomere Disease by NIH. I have Pulmonary Fibrosis and Aplastic Anemia. No liver problems at this time. They have concluded through autopsy reports and other sources that my dad had this too. He died at age 47 at Cleveland Clinic in 1969. His death was a mystery until now.
Regarding fevers, yes I have them. I call them my flare ups. 99-101 degrees and just feel terrible with them. Sleep and time makes me feel better. Many times during the fevers I go on Bactrim. My father had the same pattern according to my mother.
I am going into the protocol at NIH for this disease and will be treated with Danazol. Any thoughts on this drug? I am on predisone (10) and Imuran (50). They seem to allow me to have a normal active life. My sister and my daughter are being tested for the mutation.
Any other people in the Telomere Protocol?
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