What the HHT?
A blog for the HHT community
Introduction: With the prevalence of social media, it is almost impossible not to be connected these days. One of the most popular ways to connect with others is through community support groups, like the ones for HHT on social media sites. Most of the time, I think these groups are what our HHT community…Read More
Annyeonghaseyo! Hello, from South Korea! I haven’t written a blog post in a few months because our lives have been uprooted by the Army once again. My husband graduated Captain’s Career Course in May and our whole family moved from Virginia to South Korea in June! We spent time getting both our children screened for…Read More
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 More
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 More
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 More