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Do You or Your Loved One Have Familial or Heritable PH?
Day 5 of 30 Days of PH spotlights Daniel. He is a loving father to a young daughter. I had the privilege of meeting him on a Zoom call within the last few months. I did not know his full PH story.
Daniel has familial or heritable PH. This is rare, and this article tells us that less than 4% have this type of PH. I am saddened to hear that his young daughter also carries the gene.
Do you or your loved one have familial or heritable PH? If so, can you share some of your experiences with us?
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4 Replies
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@jenc – This is a strange one for me. I have Idiopathic but although he doesn’t have PH, Chuck’s mom & little sister both died from PH.
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Hi @barbarainmemphis, this is strange. I am thankful that Chuck does not have a PH. I’m sorry to hear about the loss of his mom and sister. Does anyone else in his family have PH? This is such a rarity! Thanks for sharing.
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@barbarainmemphis considering that PH is a rare disease that is quite a coincidence, and a sad one. I’m so sorry for Chuck but relieved to hear that he doesn’t have it. Has he gone through genetic testing?
I know of a few parents who were diagnosed with PH years after their child was. It is odd how PH strikes some so young and then a parent isn’t diagnosed until well into adulthood. So many rare situations when it comes to this disease.
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@jenc He says his grandfather most likely died from it as well. @colleensteele No, he’s not done any genetic testing. He was going to at one of the conferences but they had closed up shop by the time he got there.
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