Everyone should be their own health advocate, especially these days. Unfortunately, I wasn't one. I was always the person who never went to the doctor and said I would be fine. Well, one day, in 2020, I wasn't fine. It's wasn't COVID symptoms, it wasn't the mundane days of quarantine. I knew it was something, but I didn't know what. I could barely get off the couch and my son and I were doing two walks a day to keep busy. I felt so exhausted. This was different.

After finally going to the hospital when they were taking non-emergency patients again, I saw my first doctor since having my son. I was so tired and my back hurt daily. They ran some initial tests on kidneys, and then to the OBGYN, and nothing. Finally, they ran blood tests and found I was severely anemic. When I saw my test results I honestly couldn't believe I was still functioning. My primary care asked me if my hair was falling out yet. That was the last time we spoke. Since then, I became my own advocate. I received iron infusions and saw a Physician's Assistant every few months, which made me feel better and I was grateful,  but I knew something  was still off.  They told me the red dots on my lips and all over my tongue and fingers and ears could be vitamin-c deficiency. Even the first Hematologist I saw had no idea what it was. And by the way, they almost didn't allow me to see a Hematologist because they thought nothing was wrong.  After being so frustrated, I went to the Ear, Nose, Throat specialist down the street from my house. He said, "You have HHT". I had no idea what HHT was. He explained to me it's a genetic blood disorder that you would have to get from one of your parents. I immediately knew which one of my parents it was because they had similar undiagnosed symptoms.  Hereditary Hemorrhagic Telangiectasia, also known as Osler-Weber-Rendu Syndrome, is a genetic blood vessel disorder that affects approximately 1.4 million worldwide and yet remains largely undiagnosed. That visit was the first time I felt heard and seen and it sparked another long journey that I never thought I would take.

I waited 6 long months before I was able to see a specialist at Mass General Hospital, the only Hematologist specializing in HHT in the area. After that visit, I felt heard again. My symptoms were validated and recognized, and they provided me an option of a clinical trial. After many, many, tests, needles, body scans, I was finally ready to begin the medication.

Fast forward to today, and I had to put my trial on hold. Unfortunately, right before starting the medicine, (or placebo, because one never knows with the trial whether you'll receive an active medicine), my body started experiencing other symptoms. I'm now being seen by a cardiologist and still waiting, but thankfully getting closer to the answers I need. Hopefully, with the genetic testing promised after diagnosis, I will be able to trace this disorder through my family history and to help my son and others  around the world with critical information on how HHT can affect the whole body and to inspire others to be an advocate for early diagnosis. 

If you've ever been in a health situation where you haven't felt heard and you wanted more answers and access to resources, I'm here to help. My passion for purpose in health and wellness is to provide you with information on the most innovative resources including at-home wellness wearables and even genetic tests which can put the pieces of the puzzle together without the wondering. It has become my mission to bridge the gap between tradition healthcare and patient access to technology, products, programs as well as financial and mental health resources. 

I'm looking forward to meeting you in the comments so that we can inspire change together.  They say knowledge is power, so let's do this!