There is a must-read for more inspiration about living with sickle cell anemia (SCA) – a young woman’s blog, but not just any blog.
She’s a DIVA (as in, absolutely fabulous!) when it comes to living with this serious, chronic disease.
Sickle cell affects nearly 100,000 Americans who are of African descent. While there are some treatments available to treat the symptoms, there’s little that can be done to stop or halt the disease. So people live day by day in pain with chronic fatigue that can be disabling.
What’s so special about her blog? Well, this gal refuses to give up and now she’s writing a book about her experiences. She discloses the reason why she’s been quiet for so long is that for several months, she’s been needing blood transfusions to try to manage her disease. Sounds like she’s also been hospitalized a time or two, too.
But again, rather than going into her closet and sucking her thumb in the dark with her binky and giving up, this girl is standing proud, to share her journey to help inspire others! While she’s up front and honest, she’s also motivational to help unite the community. She’s trying everything she can to lend her voice and hopefully one day, a biotechnology company will come up with an effective treatment so that innocent Americans who have inherited this trait, can live productive and rich lives free of pain and fatigue.
Not only is she up front and honest, she’s also motivational to help unite the community. She’s trying everything she can to lend her voice and hopefully one day, a biotechnology company will come up with an effective treatment so that innocent people who have inherited this trait, can live productive and rich lives free of pain and fatigue.
I heard that one way to get Big Pharma’s attention is to get people to share their stories of what it’s actually like to live with a chronic condition. Imagine a large box, the size of 1-2 refrigerators filled with a video cam and “prop” that a scientist or researcher could put on to “feel” what it’s like to live with fatigue, for instance?
What prop would you suggest including in the large box? A 100-pound weighted coat? A bed of nails to lay on?
