By Katie Mitchell
We have just wrapped up Rare Disease 2016 week. How many of you knew that? Trust me, I never knew we had a week dedicated to rare diseases until a rare disease hit me directly. How great is it that we have voices in Washington, DC sharing about our rare disease. The more we know and can share with others, the closer we will be to finding a cure and diagnosing HHT patients more quickly and properly.
In 2014, I had the opportunity to speak to 70 medical students and 10 physicians at our local medical school here in Greenville, South Carolina. It was my first time speaking about my journey with HHT and I was nervous as could be. My friend, who is a physician and teacher at the medical school, asked me to share about my rare disease to help educate these young students and to show them you can look completely healthy on the outside, but have something seriously wrong on the inside.
I only had eight minutes, so I had to talk fast and convey the most important things I could about HHT. I focused on how I discovered I had HHT and how long it took to diagnose the rare disease – three years – because I was a “healthy looking” woman who could function well.
I will admit, it was very intimidating to talk about my rare disease, but I am so glad I did it. Not one medical school student in the room had met someone with HHT or knew about the symptoms. They had only read about it in a text book. They were more fascinated with the red spots on my tongue than anything, along with wondering how was I treated by the doctor and why they didn’t take a vested interest in me.
I was able to share pamphlets that Cure HHT supplied me with, answer questions they had and, hopefully, give these students and physicians knowledge into my rare disease.
My hope for you is that when given the opportunity, share. Speak up! Educate others about your rare disease. You never know who is listening and learning. Speak up, educate and share!