Edie was diagnosed with HHT (which later led to PH) 2 years ago, although she had nosebleeds for much longer than that. Unfortunately, both conditions especially PH progressed quickly and proved to be too late to treat accordingly.
Edie is survived by her loving husband, 2 daughters, 1 son, 2 granddaughters, many nieces and nephews, and so many more. It still feels extremely surreal that our angel is no longer here with us on Earth though I know she is here in spirit. We will never forget how loving and caring she was, her selflessness, positive attitude, infectious smile, and distinct laughter.
In the wake of this tragedy and also discovering that my mother, 2 sisters, and yet another aunt also have HHT, we've learned that we need to be much more educated in this disease. We need to become advocates and raise awareness to our family members and community. We need to get tested to understand who has HHT and how can it be managed so that it does not lead to a devastating outcome such as my aunt Edie's.
I wish I wasn't sharing this story about my aunt Edie's passing and that I was only trying to generate awareness about the HHT disease. Fact of the matter is that it happened and now my entire family is committed to learning more.
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Forever in my heart...
When HHT touches someone close to you, it's natural to want to share their story with others.
HHT is a relentless disease that affects over one million people around the world. Many of those people are robbed of the opportunities that would allow them to lead a full and normal life. Cure HHT is the only organization in the world dedicated solely to research, education, and advocacy that will allow us to find a cure for this disease. You can make a tremendous impact on our mission and honor a loved one by creating a Memorial or Tribute.
Whether your family has managed HHT for generations or you are the first to be diagnosed, everyone has a story to tell. One of the dynamics that keeps our small community so strong is the constant opportunity HHT families have to relate to one another.
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