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    • #23175
      Colleen Steele

      I have a a friend battling a rare disease and know a few parents whose children are battling a rare disease other than PH. I feel a close bond with these individuals because we share an, “I totally get it,” vibe when discussing day to day challenges.

      Have you formed a special bond with someone battling a rare disease that is not PH? Was it the commonality of battling rare diseases that brought you together? How do you help each other and what experiences have you discovered that you have in common?


    • #23182
      Vanessa Vaile

      My most memorable different rare disease friendship started before I was symptomatic or diagnosed. My best friend in graduate had an indivisible one, neurological, since childhood. Although not realizing it at the time, I learned a lot from her about living with with a rare disease, including dealing with people saying “but you don’t look sick,” which her in-laws did a lot. It’s their problem — not hers, mine, ours. And pacing yourself — stop and rest right away when you need to. Never mind what anyone, in-laws or others, says. And more…

    • #23197
      Colleen Steele

      @vanessavaile I had a similar friendship in college. A friend struggled with a rare disease and there was so much misunderstanding around her struggles. Some accused her of being a hypochondriac. I would like to believe I have always shown her compassion but I know it was enhanced when my son was diagnosed. I get it now more than ever and wish I could go back in time and defend her better when others lacked understanding. We are still friends through FB. I follow her journey and she follows mine.

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