The Rodham Institute discussion on Sickle Cell Disease was brilliant.
The clinical presentation at the beginning was a great opportunity for everyone to learn more about Sickle Cell Disease and understand what goes on during a crisis.
The panel discussion raised a lot of issues that absolutely need to be unpacked.
Jennifer Nsenkyire from Ghana and a member of Team Sickle Life, spoke about her struggles with the health system in the US and how it seemed the health personnel she met did not know about Sickle Cell Disease and thus had to ask her a lot of basic questions every time she was at the ER in crisis. And even after they asked they went on to under-prescribe her pain medication because they thought she must have been lying.
At some point, she would rather stay at home than go to the hospital when she was sick. This sounds way too familiar, indeed a friend sent me a question at that point asking, “if those in the US are complaining, what should those of us in Ghana say?”
All of that changed when she started going to the NIH. They understood her condition, gave her options and supported her when she needed assistance.
Jennifer talked about her struggle with depression, addiction and how she was eventually cured of Sickle Cell Disease through Bone Marrow Transplant.
The second speaker built on Jennifer’s point by asking the health workers in the room to take a minute to consider that people with life-threatening medical conditions are choosing not to seek medical care because of how they are treated in the emergency room (ER).
He (and his wife) went on to speak about several experiences in the ER and why he set out not to return to the ER, first for 1 year and how he has managed to stay out of the ER for several years due to these unpleasant ER experience.
His wife talked about her role as his health advocate because he was mostly too sick to answer all the questions that get asked in a crisis and how she always had his counts printed out, something we should all learn.
The third speaker spoke about pseudo-addiction which is unsurprisingly common is persons living with Sickle Cell Disease due to the constant underdosing of pain medication.
Questions ranged from the effect of the US opioid crisis on Sickle Cell patients who have real pain to what patients think is the right way for a doctor to communicate that they are unsure of how to manage them because different patients react differently to the opioids for example.
This disease is multiple dimensional and discussions such as these create an opportunity for important concerns to be raised, solutions found and lessons learned.
We encourage you to organize and participate in such events.
Watch out for a Sickle Life Sickle Cell Discussion in a community near you.
Congratulations to the Rodham Institute for a brilliant project.
Dr. Sefakor Enam Bankas.
(This is a summary of our experience at the Sickle Cell Disease Education event organised by the Rodham Institute. The writer is a person living with Sickle Cell Disease and a Sickle Cell Disease advocate. All views expressed are personal, please contact your doctor for further information.)