Because of the pandemic, I was feeling cooped up but found solace in doing things like going for walks and writing poetry! I also feel grateful I am healthy. I wrote a poem about the disease I have!
Oh ChAc, Oh ChAc
Oh ChAc, Oh ChAc you are among the worst,
You are not well versed nor rehearsed!
You can change from day to day,
You are what you are, the doctors say!
Oh ChAc, Oh ChAc you are a rare genetic neurodegenerative disease,
You are a movement disorder that is never at ease!
You are the reason for the involuntary movements of any extremity,
You can cause dystonia, weight loss, unsteadiness, seizures and anxiety!
Oh ChAc, Oh ChAc you are studied by researchers and followed by a small group of doctors,
You have a few known and unknown contributing factors!
You code on one allele from mom and on one allele from dad,
You are an autosomal recessive gene that is bad!
Oh ChAc, Oh ChAc your treatment is solely symptomatic,
As nothing about you is automatic!
You can be managed by meds to lessen movements and help with cognition,
And you know that exercise, Botox and DBS show to be a great addition!
Oh ChAc, Oh ChAc you are so hard on some,
While your sufferers are trying harder to overcome!
You will not get the best of us, that is for sure.
We will not stop “searching for clues to a cure!”
Oh ChAc, Oh ChAc you affect the way we talk,
You affect the way we walk,
You affect the way we eat:
Oh how, we so want you to be beat!
Oh ChAc, Oh ChAc you are a mutation found in the human genome,
But your protein function remains unknown!
Your cure is not an easy find because there are barriers to keep in mind.
To those of us that have you, we are the rare kind!
Oh ChAc, Oh ChAc chorea is the dance of the body that looks so bizarre;
Oh ChAc, Oh ChAc acanthocytosis accounts for any red blood cell that is shaped as a spiky star.
ChAc, you are the ultra-rare disease called: CHOREA-ACANTHOCYTOSIS!