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    • #22184
      Brittany Foster
      Keymaster

      Do you have PH along with spinal conditions like scoliosis or spina bifida? I am curious about that because a genetic disorder that is a rare disease called Currarino Syndrome runs in my mom’s side of the family. It is a genetic form of sacral agenesis meaning that I have an absent sacrum bone. This disorder also goes along with congenital heart disease and has an effect on the vascular system of the body which probably has contributed to my PH.

      I know that things like scoliosis can also impact breathing and the ability to expand the lungs. I am curious about people that have PH along with other spinal conditions like scoliosis and spina bifida. Does this contribute to any of your PH symptoms. For me, the scoliosis has made it harder for my lungs to expand fully and therefore has effected my breathing.

    • #22211
      Janet Barry
      Participant

      Hi Brittany. I, too, have scoliosis which runs in my family. I have sacral fractures and collapsed vertebrae. I guess these all might contribute to my PH. What do you do for your genetic disorders?
      Wishing you a blessed holiday season and a happy and healthy New Year.
      God bless.

    • #22214
      Jerri Modrall
      Participant

      Hi. I have Ehlers-Danlos, a connective tissue disorder, ankylosing spondylitis, rheumatoid arthritis, scoliosis—all of which increase the likelihood of having DVT’s and PE’s, which then can lead to PH. Ugh!

    • #22224
      Brittany Foster
      Keymaster

      @jbarry28 There may have been some contribution. For my genetic conditions I have to handle each condition that came from it separately. I have had 2 spinal related surgeries for tumor removal in the lower spine and have had intestinal blockages that needed repair due to not having the motility and nerves that stimulate a bowel movement. I have had mostly surgeries, procedures, and take multiple medications during the day to manage the symptoms that go along with having all of this going on. It can be overwhelming and a lot to manage but I like knowing what is going on with my body and why.


      @modbod115
      I have heard of others having EDS and PH and I am wondering if it impacts the blood vessels as well and maybe that it contributing to your PH too? Having all of that certainly doesn’t help with management of all of this and must make it challenging. Have you had DVT and PEs before ? You must have to be very on top of your health too.

    • #22252
      Jerri Modrall
      Participant

      Yes, I have very funky blood vessels and the doctor wondered if I had not been throwing clots for quite some time. I know I had pain in that leg for quite some time, but I thought it was related to my EDS or RA or AS…so it was kind of pain that I thought oh, well…I will deal.

    • #22289

      Hi Guys
      If you are prone to throwing clots or having DVTs ask your doc to have an anticardiolipin Antibody blood test done. My neurologist had it ordered for a chorea I have on my right side. There is a correlation of this syndrome and chorea. This Syndrome affects primarily women, and the biggest issue is hypercoagulation ( blood clots). Its not a well known syndrome as some of my doctors had never heard of it and for us with PH or portal hypertension, its important to know in case of varices or PEs. Hope this info is helpful.

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