Looking Back-A Rare Speech by an emerging Rare Disease Advocate.
Updated: Feb 11
As Rare Disease Day approaches in 2021, and I prepare to participate in discussions with representatives in DC, I'm reposting an article shared as a speech given after one of my paintings was awarded Rare Artist of the Year 2018.
First given live, then published on the Mighty and picked up internationally by Yahoo, I'm please to offer the following excerpt...
When I asked others what I should communicate on Rare Disease Day, the most important thing they shared was their plea to be believed.
“Take our symptoms seriously, treat us with curiosity, keep searching for answers and best practices. Don’t give up on us, and please avoid trying to fit us into diagnostic boxes that simply don’t suit the zebra unicorns of the rare disease world.”
The human spirit is resilient. And within the rare disease community there is a depth of courage and persistence that is remarkable. Out of great suffering comes perseverance and hope. And in my case, the gift of art is well worth the difficulty imposed by life with chronic illness.
Heather Thompson, TheoArtistic Acquired Savant
Original Art by Heather Thompson Blue Phoenix Art - Self Portrait in Digital Ink