What the HHT?
A blog for the HHT community
Awareness
Legislative Activity Impacting HHT
Recently, I have taken a more active role in the HHT community as a member of the legislative committee. It is so important for lawmakers to pass legislation that promotes and supports research and development, especially for rare diseases like HHT. I have been pleasantly surprised at how passionate I am about advocating for legislation…
Read MoreI am So Lucky!!!
A silver lining is a funny thing. You wish you could see it while you are mucking your way through a crisis, but you can’t, and it often doesn’t show up for a long time, if at all. My silver lining appeared in the most unexpected of ways. This HHT story seems like it should start with…
Read MoreHosting our First Blood Drive for HHT Awareness!
Since marrying into an HHT family, I have felt a need to do more to advocate for my family members, raise awareness, and help in any way I can. I know how precious both money and blood can be to this community, but we are not always in a financial position to give to the…
Read MoreHHT Global Awareness Day
Today is June 23, 2017 and it’s HHT Global Awareness Day! As a person who has HHT disease and the author of a new book called Living with HHT, I’m excited to be part of this special day devoted to HHT awareness—and I hope my book will contribute to HHT awareness every day. If you’re…
Read MoreEleanor goes to the dentist with her prophylactic antibiotics!
As a child, I LOVED going to the dentist. I hope by starting Eleanor out young, I can instill an excitement about dental health in her to avoid any fears/anxieties about the dentist in the future. Going to the dentist with HHT can add a bit of complexity. If you have or don’t know if you…
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