• Genetics

    Posted by d82 on May 8, 2025 at 10:11 am

    Hi . I am new here and confused and anxious. I am 62 and last year got diagnosed with pulmonary fibrosis . I have had my genetic results back and have the TERT gene with short telomeres. I now have to tell my children . I don’t want them to worry, like I do, so feels unfair telling them , but know I have to. Can others tell me there experiences please ?

    I have been on Mycophenolate at 2000 mg daily since last August and have now managed to wean off the steroids! But can others tell me if they feel so tired on these tabs too?

    Thank you

    Shelly replied 2 months ago 2 Members · 1 Reply
  • 1 Reply
  • Shelly

    Member
    May 9, 2025 at 2:33 pm

    Hi. I also have familial fibrosis. Positive for the RTEL-1 gene and telomere shortening. I lost my mom and her two sisters to this disease. If I didn’t cough all the time, I wouldn’t know anything was wrong. I have been experimenting with peptides to help with my telomeres (Epitalon) and will pay out of pocket to have them retested. I work out every day on my Peloton and do heavy weight training 4-5 times weekly. My progression has been slow and I’m not on any anti-fibrotics yet. My Pulmonologist gave me a hall pass as long as I keep up my exercise program. My next CT scan is in December. My kids are aware of the genetic possibility of them getting the disease, I really push them to take care of themselves now.

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