Some may ask why am I an HHT warrior? What is HHT*? Why are you so passionate about HHT? You don’t look sick, you seem healthy. These are just some of the comments and questions I hear often… often enough to drive me to write about it, especially now during HHT awareness month. The month of June is not only a month to raise awareness, but also a month of hope, a chance for new friendships to form near and far, a time to grow the HHT community. For those who may wonder, I am the face of HHT.
My HHT journey started almost 3 years ago. October 2018 will mark 3 years since we lost one of our own. December 2018 will mark my official HHT diagnosis via genetic testing. Life is a wonder, and it often leads you down a path you didn’t expect to have to cross, to endure and to fight your way through. With the passing of my beautiful, young, full of life, Aunt Edie, came great loss to my family, but with great loss also came great awareness. You see, the face below is the face of an angel, the one who saved us all. She led us down a path we didn’t know existed, the path of awareness. A path filled with screening tests, good and bad days, but above all a path that I believe has saved us and has led us to established medical teams who specialize in HHT and will aid in the lifelong battle of managing HHT and treating it as needed, for there is no cure, there is no surgery, or pharmaceutical drug that will cure HHT… not yet, but I have hope, I have faith, I have a team of warriors behind me, and I am an HHT warrior for life.
My passion, one of my life’s missions is to continue to be an HHT warrior, for as long as I can, in any way I can. The face of this sweet baby girl you see below is my WHY. She is my reason for fighting as hard as I do, for pushing forward every day, harder than the day before, and for never allowing myself to think that HHT will win. Almost 3 years ago, I accepted my HHT diagnosis and continued on with life as I’ve always known it to be. It took me almost a year, to gain the courage and the strength to have my baby girls genetically tested for HHT. My heart knew what the tests confirmed, yet the rest of me didn’t want to accept it. One of my baby girls was positive, the other was negative. It took me a long time, to accept the diagnosis and I went through months of denial, guilt, sadness, followed by more guilt, and sleepless nights where the tears flowed like a river at the mere thought of the life she could potentially have to ensure, because of me. I was the one that was supposed to protect her from all that is evil and bad in the world, including sickness. I wasn’t supposed to be the one that could potentially cause her harm. I was heartbroken, shattered and felt so much guilt. Thankfully with the support of my family, my faith, and my passion for fighting to find a cure, I became stronger with each passing day, I slowly started to regain the courage I had lost, and decided to fight and never give up. Fight for her, fight for me, fight for my family also plagued by HHT, fight for us all and fight for you. When asked why am I so passionate about the Cure HHT organization and in finding a cure, I retell my story over and over and spread awareness any way I can.
Join me during the month of June, HHT awareness month, raise a hand, raise a voice, raise awareness, find your WHY and become an HHT warrior alongside me! We have power in numbers, knowing is being aware, and awareness is the first step in fighting HHT. Together we can and together we will find a cure!
*Hereditary Hemorrhagic Telangiectasia (HHT), also known as Osler-Weber-Rendu Syndrome is a genetic blood vessel disorder that affects about 1 in 5,000 people worldwide. HHT does not discrimiate … it impacts males and females, regardless of age, from all racial and ethnic groups. To learn more, visit www.curehht.org.
“When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible.”
– Christopher Reeve