Yes, I confess, I am obsessed with reading about Orphan Diseases.*
From idiopathic birth defects to various neuropathies, all topics interest me.
In a freakishly peculiar, macabre sort of way.
Like watching a train wreck, can’t look away.
Mesmerized, can’t stop reading about diseases that are rare.
Found some new symptoms with my doctor I can share.
A field day for hypochondriacs.
Not lucrative to keep the interest of big pharma or academics.
Is the term, “Orphan Disease,” politically correct?
The term sounds Dickensian; let’s not nitpick over semantics.
People living with Orphan Diseases often feel isolated socially.
Express themselves poetically.
Parkies can feel their pain.
We appreciate our large PD support groups again and again.
* In 1984, in the US, as an amendment to 1983 Orphan Drug Act, the Food and Drug Administration defines a rare disease as any disease that affects fewer than 200,000 Americans. The UK and European Union define a disease as rare if it affects fewer than 1 in 2,000 people.
History of the term "Orphan Diseases" can be found at this link -- https://medcitynews.com/2015/02/brief-history-name-orphan-drugs/
I like this more every time I read it. Thank you Alice.
Well done Alice
Thanks to Emily Chapman our wonderful monthly poetry teacher for sending a summary of all comments and suggestions to improve this poem. I hope that I addressed all of them. What a luxury to have such an opportunity for feedback.
Certainly we should be grateful that pd is the focus of so much research.