I’ve recommitted to writing my monthly blog with a focus on HHT awareness, being newly diagnosed with HHT and ultimately living with HHT. This month, I wanted to focus on the many faces of HHT, starting with my own.
HHT does not discriminate against race, age, gender, weight, ethnicity, nationality or any other characteristic known to human kind. It is nothing short of a terrible rare disease, with no cure, genetically passed down from generation to generation, often unknown and undiagnosed, or spontaneously born into a new generation unaware of its existence.
It often takes an awful incident to bring awareness to a family…the loss of a loved one for example. My family falls within this category. October 2015 we lost our beautiful, vibrant, loving Aunt to HHT at the young age of 47. For her, her HHT diagnosis came too late and it eventually led to PH (Pulmonary Hypertension), and her passing.
She had been diagnosed with asthma most of her adult life, no second thought given to a rare disease such as HHT. Once diagnosed with HHT, it was a mere two years before she lost her battle. It took her passing to bring awareness to our family, and to make it our mission to bring awareness to others, to the world.
Since my Aunts’ passing, her youngest daughter has been genetically tested and diagnosed with HHT. My mother has been clinically diagnosed along with her older sister, one of my sisters and my little nephew. It has plagued our family and yet it has reminded us how important early diagnosis is in the hopes of living a full and happy life while managing HHT, adhering to guidelines for screening and establishing a medical team specializing in HHT and is affiliated with an HHT Center of Excellence.
If you’re reading my blog, the take-away message I want to pass on is to get tested, if you haven’t already done so, and have all of your loved ones tested. Don’t let an awful incident happen to your family, as it did to mine, before you react and do something about it.
Don’t wait until tomorrow, do it today. You are here in this moment today, tomorrow is not guaranteed. We are only given one life to live, and only one body – treat it well in the hopes it will treat you well too. Above all, keep the faith and hope that one day soon, perhaps not in my lifetime or yours, but hopefully in our children’s lifetimes, a cure will be found. I have faith… I have hope…
I have HHT, HHT does not have me!