Once upon a time there was a little girl who loved to spend time with her Dad. When they were together, her Dad would have terrible nosebleeds and the little girl felt very sad for her Dad. As the girl grew up and had children of her own, she started to have nosebleeds just like her Dad. She didn’t want her life to be restricted by nosebleeds so she started to visit doctors. No one could provide a reason why she had nosebleeds.
Scared because she couldn’t get the help she needed, she lost her spontaneity and confidence with others because she was always anticipating that her nose would bleed. She began to search the internet and found the HHT Foundation. She called and got the help she needed from physicians who understood HHT disease. A thorough screening identified a fistula in her brain and liver AVMs. The HHT gene was identified in both of her children.
Today, she and her family are under the care of HHT physicians at HHT treatment centers. Her fear has been replaced by knowledge and frustration by hope. She is grateful to the Foundation and outstanding physicians who have restored her faith and hope in finding a cure.
— Deb Drysdale, HHT Foundation Board Member
As we wrap up HHT Awareness Month, Deb’s story demonstrates the impact HHT can have on an entire family, for generations, following each family member throughout the course of their life. Her story demonstrates not just the physical impact of living with HHT disease, but the psychological impact as well. Lack of a diagnosis only compounds the fear, frustration, insecurity and embarrassment experienced by sufferers of HHT. All of these common emotions could be alleviated with an answer. Generations can live a better life if we find a cure.
HHT Awareness Month may end this week, but our mission is far from over. Help us spread the message of HHT Awareness not only over these last few days of June, but throughout the year as well. Awareness is change and we will only make a difference if our voices stay strong until that change comes. Continue to follow HHT Foundation on Facebook and Twitter and share our messages with your social network throughout the year.
Together, we will find a cure for HHT and soon, we can say “Once upon a time, it took 30 years to be diagnosed with HHT.”