What the HHT?
A blog for the HHT community
Posts by Cassi Friday
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 MoreGenetics 101! Happy New Year, HHT Community!
I thought I would use this time and space to update you on the newest Friday family addition, our son, Theo! Theodore was born last month and came out a healthy, hefty bundle of snuggles and cuteness. Our life has been a giant blur of moving to a new duty station, having a baby, chasing…
Read MorePlaying the Medical Case Manager – How to Keep it all Organized
Does anyone else find it overwhelming to keep the appointments, medical offices, and treatments all straight? To remember the entire medical history, to have to explain HHT for the thousandth time, or to spend forever waiting on a hospital line to speak to someone? When you don’t have an actual medical case manager, you often…
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 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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