BIG props goes out to a 43-year-old woman who’s living with sickle cell anemia! Having been accused of “jonesing” for more pain medication in the hospital, she quickly became sick and tired of being sick and tired.
She fought back in her own special way: she wrote a book. Yes, she wrote a book about what it’s like to live with sickle cell anemia (SCA). You can read more about it here. I’m not endorsing her book, but rather am applauding her for having the courage to write about her experiences.
Her biggest frustration is that there is no protocol for doctors and nurses to follow for treating SCA—especially during flares that can cause intense pain throughout the body. She likens it to having a heart attack and how doctors follow the standard procedures for treating it, similar to following protocol for someone having a stroke.
There are standards in most disease, but not SCA? Why? Because everyone is different and what works to help one person may not help the other person.
My big question is how does this young mother (yes, I think a 40-something gal is young!) manage to pick herself up and do her children’s laundry? Cook? Clean? Run them to the game? It’s not magic. It takes a lot of mindfulness to press through the pain.
I also appreciate how she quotes the Reverend Dr. Martin Luther King who spoke at length years ago about the injustices of the healthcare system—because EVERYONE should have access to proper healthcare. It shouldn’t matter the color of your skin. And yes, it makes me wonder, since mostly African Americans and people of African descent are stricken with this disease, is the “cure” or the lack of effective treatments somehow related to bias?
Surely not. Still, it makes me wonder. If SCA mostly affected “Irish Americans,” would they receive better care?
We need MORE inspiration to help raise awareness that will lead to effective treatments so that people will be spared living with chronic pain and fatigue.
