What the HHT?

A blog for the HHT community

Courage

Sometimes lessons of courage come from the smallest of humans.  Anthony was only 7 years old when we discovered he had an eight-centimeter AVM in his brain! Six months prior to this discovery, Cure HHT had published guidelines on how to treat pediatric patients with HHT. At the time, Anthony was being followed by our…

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It’s Hard being Rare!

My name is Jerica. I’m a mother, daughter, friend, and fighter. So Many Possibilities…So Little Answers My fight started back in February 2019, when my gynecologist ordered an ultrasound for some abdominal pain. I was living in fear of having cysts on my ovaries. The test came back normal and my gynecologist referred me back…

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Just Breathe – Battling HHT

It has been sometime since I have been able to contribute to the Cure HHT blog. Needless to say, the road has been challenging. I am excited to be able to partake in this journey with my fellow bloggers and readers once again; and share the many issues, obstacles and pertinent lessons learned along the…

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“How the Healthcare Industry Failed my Daughter”

Hello everyone. My daughter, Sofia, is 13 years old and has recently been diagnosed with HHT. When Sofia was about three years old she started getting frequent nosebleeds. We tried all the obvious things, humidifiers, Vaseline or Neosporin in her nose, etc. As she got older, the nosebleeds became more frequent, more intense and harder…

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Everyone Should Use Backpack Health!

Two years ago, I wrote a blog about being the medical case manager for my own family where I shared tips and tricks to keep information organized and how to keep medical records when you transfer to different healthcare providers. This has always been a challenge for us as a military family. We move every…

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