What the HHT?

A blog for the HHT community

“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…

Read More

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…

Read More

Recorded WEBINAR: IVF and Pre-Implantation Genetic Testing for HHT

On July 16th, Katie Wusik Healy, LGC, MS, Genetic Counselor at the Cincinnati HHT Center of Excellence, talked about pre-implantation genetic testing (PGT), including what you might consider before pursuing PGT. In addition, options for determining if a child has HHT through genetic testing before and during pregnancy, as well as after birth were discussed.…

Read More

How a Stroke Changed My Life

Just a few years ago, I was a 48-year-old sales manager and an owner of a large, successful manufacturing company. I was always in great shape, and when my partners and I decided to obtain disability insurance, I was rated the #1 best for my health at the time. But 3 weeks later, a “time…

Read More

I was finally part of the 1%

This is a story that begins back in mid-summer of 2005, June 9th. Thirteen years ago, my brother, Robert, died from HHT (Hereditary Hemorrhagic Telangiectasia). HHT is a very rare and chronic blood vessel disease with little awareness and funding. Currently there is no cure for HHT. An estimated 1.4 million people worldwide suffer from…

Read More