Today is #RareDiseaseDay.
Okay, everyone! Don’t get all excited and try to get to the head of the line. They aren’t giving out samples…lucky you. But they are acknowledging …pain.
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Most people don’t know that I was born with a genetic illness. I considered myself lucky. When I was born, my genetic illness kept turning on and off. My body was able to grow, and it did with a lot of pain. In the 1960s unknown diseases were considered ‘all in your head.’ That made me angry. Angry that no one listened. So I stopped talking about my pain. I was barely four years old when I stopped complaining and stood away from walls and ran. I ran from my pain.
What is my illness?
Hypothyroidism. I was born with it. It affected my ability to walk, until I learned to ignore the pain. ( And yes! That can be done, especially with young children; pain will become the norm.) I would hold onto walls, sit on the stairs and move slowly up or down, navigating one step at a time. I learned to pretend I wasn’t in pain. To pretend that I didn’t feel like biting ants were crawling under my skin or my head wasn’t about to explode or that the bones in my legs didn’t feel like my flesh was being shaved off or that time hadn’t just moved away from me, and I didn’t know where I was.
When my body turned on; my thyroid would decide to work. I would play catch up in school. Passing tests and watching where I stepped and walked, mainly ran, from the school to home. I grew up on the Westside of Chicago. So ignoring what was around me could be deadly. I grew up with those riots of the 60’s and I saw racial or rather ethnic tensions. The color of your skin defined who you were thought to be. All the while, my skin felt like it was being carved off my bones.
What kept me going was a simple phrase: “But, for the grace of God, go I.” I went to church every Wednesday for catechism and every Sunday morning mass at Our Lady of the Angels church.
I read a lot of books, stories, and encyclopedias; any books I could get my hands on I read over and over. When I was in high school the pain took over my hands. At that time, I was an art major at Lane Tech high school.
I married young, had two children; my second pregnancy I stayed on the couch for seven months….praying.
I wasn’t diagnosed until I was in my early thirties. And then I remember the doctor getting close up to my face and asking how I was still moving. I had barely any thyroid hormone in my body; I should have been in a coma.
Ah, “But, for the grace of God, go I.”
That doctor saved my life, Dr. Paloyan; he believed in my pain, and he gave me a pill that opened up the world for me. It was as if the wind moved inside me and the pain was being swept out. I went through two cancer surgeries over the next eight years. And for the rest of my life, I have yearly check-ups. But… I have a life.
We need to support rare disease research.
Genetic and Rare Diseases Information Center (GARD) https://ncats.nih.gov/gard
Genetic testing: Fulgent Therapeutics LLC
