What the HHT?
A blog for the HHT community
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
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…Read More
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
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
Hello Cure HHT community. I’m Janice Lee Jones, originally from San Jose, CA. I’m a 46-year-old woman who has been dealing with HHT unknowingly for 34 years; and knowingly for the past 12 years. My faith in Christ is what has kept me, and I excitedly look forward to a cure for HHT and the…Read More