This group unites PH patients, caregivers, researchers and medical professionals in a platform to discuss the latest research and medical advances related to pulmonary hypertension. Information shared in this group is public.
Just a note about a HFpEF PH research study I’m currently participating in. It has to do with a naturally occurring substance called BH4 for short or Tetrahydrobiopterin. IF and it is just an IF, I got the real thing the first time around I must say I’m impressed. I’ve participated in several studies using other “natural” substances such as L Citrulline, which has merit, but personally am liking what happened with the BH4. Hitch is while we can all go get the antioxidants and vitamins the BH4 is really, really pricey (and no the stuff on Amazon isn’t it). Also some people are “responders” and some people are not. I just want you all to know there are many very good, brilliant people out there working on our behalf. What they need is for patients to step up to be research subjects. This BH4 study may just get shelved like others because more patients aren’t willing to step forward.
Beverly, thank you for backing the need for more patients to participate in research with your own experience. As they say, “Action speaks louder than words.”. We can all play a more active role in assisting with medical advancements.
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