In my years of advocating for Persons Diagnosed with Sickle Cell, I've heard, and seen much first hand, as well as learned from others!
Really, everybody's got a story to tell! “I should have done this”; “The Dr. found out . . .”; “They needed to have done this first,” etc.! That's hindsight!
After representing our Sickle Cell Community at the 2015 Global Genes 4th Annual RARE Patient Advocacy Summit, it came to me, "That's what's missing! People sharing their stories!!! What should have happened instead of what was done that resulted in the death of a person!!! What if the bad experiences that resulted in patients staying in the hospital longer to having a near death experience could be told?”
I thought if those stories are shared, it can make the difference to save another person from experiencing a mistake, thru the tragedy of death!
It’s pretty much like finally discovering how patients were contracting some infections while hospitalized! It was finally discovered that male doctors wearing long ties carried germs from patient to patient. That's why Drs. don't wear those types of ties anymore!
I thought it would be presented another way, discoveries made in an online group setting. But knowing that it would be very sad, bring up the pain again I would have to find a psychologist to help the participants address the sadness, pain and come to terms with their loss! It just did not come together!
It wasn't until I ran my mouth to KiKi Shepard, who listened and thought it was a great idea, and it came together in this format!
This confirms doing My God’s work and knowing it will come to reality, in Gods time! I’m honored to present the monthly series titled, “Sickle Cell in Hindsight.”
Nita Thompson, KISF SCD Community Liaison / Advocate