I am a wife, I am a mother, I am a daughter, I am a sister, I am a niece, I am a person affected by HHT and am passionate about the cause! I am focusing on HHT awareness today.
No one is ever quite prepared for the loss of a loved one, especially if that loved one is a younger age. This was the case with my Aunt Edie. She was 46-years-old when she was taken from us much too soon by HHT. My aunt was diagnosed with Hereditary Hemorrhagic Telangiectasia two years prior, by way of genetic testing, and a few months later was diagnosed with Pulmonary Hypertension.PH is classified as having high blood pressure in the lungs, where the blood vessels become damaged and/or narrowed and the heart has to work harder to pump blood through them. If you have HHT, you are at risk for PH, clinically labeled as HHT-associated PH, something we learned too late when it came to Aunt Edie.
I am a believer of researching, raising awareness and educating myself and others in order to better understand HHT and the effects of it, PH is no exception. Throughout my research, I constantly read that it’s not known how many people have HHT-associated PH, but it’s estimated to affect one in 15 percent of families with HHT2 (ALK1 gene modifier). In HHT1 (Endoglin gene modifier), HHT-associated PH is estimated to be much lower.
I bring this up, because it’s important to know there are different types of HHT. Unfortunately, in my Aunt’s case, she was diagnosed with HHT2 much too late in life. Members of my family, including myself, have also been diagnosed with HHT2 and that number, that estimate, that one in 15 percent of families with HHT2 scares me every single day.
I wear my Pura Vida Cure HHT bracelet to remind me of this – that life on this earth is much too short and not to take any of it for granted… to give me strength, faith and courage. Keep pushing forward, and always keep the faith.
In an effort to raise funds and awareness, I am organizing a Cure HHT Ride at 11:30 am on August 6 at Rev’d Cycling Studio in Patriots Place in Foxboro, MA. This charity ride will be in memory of my beautiful Aunt Edie.
I have a big goal, and one that I know we can meet if we all come together as an HHT family, and make the event a success! All funds raised will be donated directly to Cure HHT.
Join me while we “sweat”’ it out to some awesome music for a 45-minute spin (indoor cycling) ride. If you can’t make it for the ride, please know that every $1 donated counts, no donation is too small, to keep raising awareness for HHT. With your help, we will be one step closer to finding a cure soon!