Sickle Cell Disease Advocate & Precision Medicine Leader Remembered
Shakir Cannon’s motto for living with sickle cell disease was, “Any day without pain is a good day!” That’s how he lived his life, appreciating every single pain-free day. The young sickle cell disease advocate is in pain no more. Sadly, in December 2017 Cannon passed away after a cold quickly turned into pneumonia.
Cannon didn’t consider himself a patient of health care but rather a partner in health care. In 2015, Cannon co-founded the Minority Coalition for Precision Medicine (MCPM) “to mitigate/eliminate health disparities of minorities by expanding the awareness and use of “Precision Medicine” to increase personal health and reduce individual and government expenses in providing crucial health care.” In February 2016, Cannon was among an elite group of individuals invited to the White House to participate in the White House Precision Medicine Initiative (PMI) Summit to find new, ‘precise’ ways of addressing health care research.
In honor of his life and advocacy work, the “SEED of HOPE” campaign was created to bless patients at two inner city hospitals on New Year’s Day. To contribute to the campaign and bring awareness to sickle cell disease, click here.
Below is Cannon’s original “My Story” that he shared in 2016 about his inspiring sickle cell disease journey.
Experiencing sickle cell disease personally, Cannon knows how important it is to be proactive when it comes to making changes in health care. Here, he shares with BlackDoctor.org the realities of growing up with sickle cell disease as a young man and how he’s turned his pain into a powerful affirmation.
As I look back at my childhood, I realize I was very fortunate. I’ve heard many horror stories from others who have the same type of sickle cell disease that I have (Hemoglobin SS), who aren’t as lucky me. I mean, yes, I did have a stroke when I three (which led to years of physical therapy to aid in the strengthening of the right side of my body), but other than missing one day per month from school to get my monthly blood transfusions, one could say I led a normal life.
Well, I guess besides the nightly subcutaneous injections of Desferal, which ran overnight by a pump (for a duration of 10 hours) my life was pretty normal. So normal that I would often forget that I even have this devastating hereditary illness.
It wasn’t until I got my first surgically implanted portacathe to ease the process of any infusions where I began to notice that, yeah, I guess I was pretty different, especially with this portacathe looking like a “triple nipple” (as my fellow classmates would occasionally joke).
I started to feel different. Not necessarily in a negative way but just unlike the other kids, who seemed to have no physical ailments whatsoever.
Now, not only did I have the bulging catheter in my chest but I also had the scars to prove it. Fast forward to high school and a few replacement portacathes later, I’m now scarred up, underweight and very much below average height for a high school junior.
To add to my list of medications, I started taking Nutropin, which after almost two years of this growth hormone therapy, finally sparked my growth spurt, causing me to grow from being a 4’9″ junior in high school to a 5’9″ freshman in college. This may have played a subconscious role in my decision to stay home and attend my local community college for my first two years of college. That and the fact that I was still accessing myself on a nightly basis through my port to administer my medication.
Years later, 2005, my first junior year of college, as I had to repeat a few courses here and there (computer science was hard don’t judge me), I went with a friend to a local college basketball game. If you’re from the Albany area, it was a U-Albany vs. Siena game at the Times Union Center, so it was a pretty big game.
It was kinda a last minute decision so we ended up with some nosebleed seats. That higher elevation mixed with the fact that it was an extremely cold winter that year, I was struck with intense breathtaking pain in my chest.