What the HHT?

A blog for the HHT community

Blog

Blissfully Ignorant or Hyper-aware?

Does anyone else teeter between these two states of mind? My husband and I often discuss which is better – As the person with HHT, he would rather be more on the blissfully ignorant side. His symptoms are not very severe (no AVMs we know of, but a lot of nosebleeds), and his family rarely discusses their medical issues, if…

Read More

One of the Many Faces of HHT

I’ve recommitted to writing my monthly blog with a focus on HHT awareness, being newly diagnosed with HHT and ultimately living with HHT.  This month, I wanted to focus on the many faces of HHT, starting with my own. HHT does not discriminate against race, age, gender, weight, ethnicity, nationality or any other characteristic known…

Read More

Being Competitive & Knowing Your Limits

Growing up, I was always in some sport. It began with t-ball, then transitioned into fast pitch softball where I was running back and forth from one field of play to another. In middle school, I had track right after school and then my mom would drive me to the next town over for softball…

Read More

Little Eleanor’s First Center Visit

Wow! What a week it has been! We just got back to Kansas from our trip to the Washington University HHT Center to have our daughter screened for cerebral AVMs. A reminder for my friends and family who are reading along – an AVM is an arteriovenous malformation that can occur in the organs of patients…

Read More

Here We Go Again: Follow-Up for a HHT Patient

I’m starting all over again with the poking and the long needles, and the fasting before blood work is taken, and the MRAs, MRIs and CTs with and without contrast, and so on and so on and so on… Unfortunately, this is the life of a person who deals with HHT. Regardless of how I…

Read More
Page 3 of 71234567