Allow me to introduce myself as I begin to write about my personal journey with HHT and how I arrived at where I am today: My name is Tania Competiello, I am 39 years old of Portuguese descent. I was born and raised in Portugal until the age of 11, when my family immigrated to the United States.
As a young child, going into my adolescent years, I experienced occasional nosebleeds, none too alarming or lasting longer than a few minutes, heavy menstrual bleeding, migraines and I bruised easily, all of which were seen as “normal.” I now look back to those times, and think… it wasn’t normal then, but no one knew better or pushed to find out more and ask why.
Shortly upon graduating college in 2001, I met my husband Rick and we were married in 2006. In 2009 I gave birth to our first child, Sofia. I had a normal pregnancy, with the exception of more regular nosebleeds, which my OB/GYN attributed to pregnancy. In 2012, we welcomed our second child, Olivia. Once again, I had a normal pregnancy, with the exception of even more nosebleeds, which were once again attributed to pregnancy.
Over the next three years I continued to have occasional nosebleeds, lasting longer in time. I discuss this with my OB/GYN and my Primary Care Physician, both of whom say it could be allergies or dry air, and recommend the use of humidifiers, nasal saline spray and allergy medication for pollen and such.
All of it helped a bit, but the nosebleeds continued, even more so when I was feeling stressed, tired and dehydrated. During this time, my family uncovers that my mother’s youngest sibling, Edie Travassos, has tested positive for HHT type 2. Shortly after her diagnosis, we find that my Aunt has Pulmonary Hypertension (PH) and has progressed to an advanced stage, which requires her to be heavily medicated and to wear a medicinal pump, daily, everywhere she goes. We were hopeful and we kept the faith, as none of us knew much about HHT, the effects of it or the possible negative outcomes, including the possibility of death.
This brings us to Fall 2015. My Aunt Edie and I discussed having other family members tested for HHT, as we knew it was a genetic disease, most likely passed on for many generations, in the hopes of finding the disease early enough to prevent it leading to PH. In September 2015, I tested positive. I was devastated, saddened, frustrated, angry and afraid, not so much for myself, but for my girls, Sofia and Olivia. There was a very real chance I had passed on this disease to them, a 50/50 chance I was told… I was heartbroken and felt helpless. None of these feelings prepared me for what was to come next.
As I type these words, my heart is heavy and the emotions are still raw. My dear, much too young, Aunt Edie lost her battle with HHT/PH on Oct. 12, 2015. She was only 46 years old. She leaves behind a large family that loves her and a young generation of nieces and nephews that will fight this horrible disease as much as we’re able to in her memory.
I was laid off from my marketing role of almost nine years and one month later my husband was also let go after almost 14 years of loyal service and dedication. My life, my world as I knew it, was crumbling around me, and I had never felt so helpless as I did those weeks, those months, leading up to the Holidays. I was determined not to let HHT define me, or the loss a dear loved one define me or the loss of a job define me. I needed to be a strong role model for my children, I needed to keep pushing forward and always keep the faith. This much I knew.
In November 2015, my other sister, mother and I made the trip to the Yale HHT Center of Excellence and had further testing done. I underwent a physical examination, which further confirmed my genetic test results, an MRI and Echo Bubble study. All outcomes were negative for AVMs, and I was advised to repeat the tests every five years for the rest of my life, unless other symptoms surfaced before that time. I was also advised to have my children tested and encourage other family members to do so as well.
My sister and mother were clinically diagnosed with HHT during their physical examinations. I remember leaving that day thinking I now have answers as to why I am the way I am, there is a diagnosis and there is a reason. But I also remember feeling helpless, defeated, angry, guilty and afraid for my children. No one knows what tomorrow will bring, with or without HHT.
As the younger generation of our family, we are now learning more and more about HHT and how terrible it is, and that fact that there is no cure yet. As a mother, I cannot and will not accept this. I will continue to raise awareness and do all that I can for the cause, for my Aunt Edie and for Cure HHT in the hopes of finding a cure, if not in my lifetime, in my children’s lifetime.
Keep the hope, keep the faith and reach out to others for support. I am here to help raise awareness, to lend a listening ear, to offer a shoulder to cry on and to support. I need your support as well as I navigate through this journey we call life, and learn to live with and fight HHT. This is my goal for writing this blog and I hope you feel the same.