By Risa A.
My name is Risa and I have Acromegaly.
From the NORD Rare Disease Report: Acromegaly is a rare, slowly progressive, acquired disorder that affects adults, most often during the fourth or fifth decades of life. It occurs when the pituitary gland produces too much growth hormone. This disorder occurs in approximately 50 to 70 people per million.
This diagnosis has changed my life has immensely. I went from being an Ironman athlete and being extremely detailed in my work, to barely able to walk and forgetting more things than I wish to admit.
On the flip side of this, my Pituitary tumor has offered me the best gift of awaking to a new way of being, to a new me. I embrace life more fully now. I published a book about my journey called “The Road Unpaved,” rode my bike from Canada to Mexico down the Pacific Coast, and took all kinds of classes like Hip-Hop dance, Bollywood, Improv, and Salsa. I tried silks aerialist circus classes, indoor skydiving (I’ve already jumped out of a plane), became an artist, and now I guide others in living their own lives more fully.
It’s nice to be seen, recognized, and heard on Rare Disease Day. While most people go about their daily lives, there are people out there like me who are simply happy to be alive. Happy to wake up each day, happy to exist despite the challenges. It’s nice to have a day that recognizes this.
Life is different for people living with rare diseases, whether you’re the one with the disease or living with the one with the disease. It’s an added physical and mental challenge, expense, energy, responsibility, and more. Bloodwork, lab tests, exams, and medication are now a part of my daily schedule. along with my regular responsibilities of making a living and getting through my daily life. Included in this are now the symptoms of my disease and the side effects of medications. Good thing I love a good challenge!
To me, health equity, the theme of Rare Disease Day, is a matter of feeling heard. I am an active human in the medical world, and I expect to be treated as capable and knowledgeable about myself. After all, I am the one living with my disease. Please take my lead and treat me with respect.
I show my stripes every day by being an advocate for all those facing life challenges. I am a beacon for those facing adversity. I show up as the best human I can be, I use my voice to be heard, and I empower others to do the same. There IS life after diagnosis and only the individual gets to choose how they want to move forward with it.
Feeling inspired? Click here to read more stories and learn how you can get involved this Rare Disease Day, including by making a donation to NORD today.