A few months ago, I was in the hospital on my thirteenth admission. I was in the hospital for six weeks undergoing blood transfussions, TPN, iron infusions, and surgeries. I was at a hospital in Dallas, TX and had three doctors, seven nurses, four interns, and five residents taking care of me. None of which could explain what was wrong with me, what to do about it, or how it will affect my life.
One week after I was released from the hospital, I received a call from a radiologist who took and reviewed my CT scan and MRI. He explained to me that he believes I have a rare genetic blood disorder called HHT. He then explained to me everything he could about it. He also offered to buy my parents and I tickets to an HHT conference.
At this conference, I received DNA test results and I was clinically diagnosed with HHT and JP. I learned quite a bit about this rare genetic blood disorder. Most of the information I learned during this conference was interesting and new; though, nothing hit home for me until I saw this video.
Most of us with HHT have our own stories or nightmares of the awful near death experiences. However, the video on the link I attached has a few HHT patients discribing their story, in hopes of spreading awareness.
If you would like to see the video, please visit the following website: http://video.hht.org/
No comments:
Post a Comment