Local Sickle Cell Warriors Joined Forces with Doctors at the 2023 Sickle Cell Symposium

The 2023 Sickle Cell Symposium took place recently in the city of Detroit at the UM Detroit Center, located at 3663 Woodward Avenue. Members of the sickle cell community included SCD warriors, supporters, caregivers and medical professionals. They filled the event space to join together to discuss topics such as emergency care, advancement in treatment and pain management. However, the conversation didn't just end there, it continued with featured guest panelist sharing their lived experiences with those in the room.

Drawing everyone's attention, the focus was on the wholistic view of sickle cell disease. Which has not always been the case. You see, historically speaking, sickle cell disease has oftentimes been overlooked. Having been deemed and weaponized as a Black disease, those living with the illness have also been labeled as "Drug Seekers".

The journey that many have faced when it comes to the advancement of treatments and research done in America and across the world, has been severely been delayed due to prejudice, racism and health disparities. For that reason alone, it has caused significant concern amongst the sickle cell community. Sickle cell warriors should not receive, nor should they expect to receive a lower standard of care than the general population for any reason, including but not limited to their race, age or gender. However, it is a known fact that, implicit biases have bleed into the decision making and treatment options available to patients across the United States.

Most recently, it seems as though there is a glimpse of hope for families, supporters and especially those individuals who live with sickle cell anemia each and every day. In recent news made by the FDA, they are considering the first CRISPR gene editing treatment that may cure sickle cell disease. As discussions continue, the new exa-cel treatment underway would use the patient's own stem cells. From there, doctors would alter them to fix the genetic problems that cause the disease and return them back to the patient in a one-time infusion, according to cnn.com.

Now the CDC states that, SCD occurs about 1 in 365 Black or African-Americans and 1 out of every 16,300 Hispanic Americans. These statistics are alarming and should be considered as such because, there is a significant number of lives who are impacted by the illness. That is why awareness, education, research, policy changes, just to name a few, must continue to be a driving force of change. As of now, there is still no universal successful treatment at this time

Locally here in the state of Michigan, that force is fueled by individuals who have embodied themselves as being a part of "the village". The theme of Detroit's, annual sickle cell walk that was inspired by the Sickle Cell Association of America, Michigan Chapter, "It takes a village to care for a sickle cell warrior". This year's symposium program also featured speakers from the University of Michigan, Henry Ford Health, the Detroit Medical Center and the Sickle Cell Association of America, MI Chapter.

In a conversation with Ayodel Akinpelu, Sickle Cell Warrior and Panelist, we discussed the possibility of the CRISPR gene editing treatment, his thoughts and his feelings. He says, "I am hopeful for a cure but unrealistic that it may happen in my timeline. The CRSIPR sounds interesting but, I am apprehensive in regards to making the person(s) sterile with this procedure! I was put here to multiply my seed this sayeth the Lord."

Other panelist like Qiana Quinn, Versetta Brown and Dedra Flowers, gave attendees insight on how they have begun to experience new challenges with the disease as they've become women living with Sickle Cell beyond the age of 35. They also expressed, how they handle motherhood and how they navigate through the pain and still being needed as a mother day in and out.

Lastly, I had the honor to be a panelist at this event as well. I shared my experience as it related to the transitionary period between childhood, manhood and fatherhood. How the road of a leader and visionary can be faced with harsh realities. However, as I say, "I may have sickle cell anemia but sickle cell doesn't have me". Simply put, no matter what, I will forever complete the task at hand. My goals and visions will be obtained no matter what, even if there is a slight delay in time, I will achieve it.

Overall, for those who attended the event, high emotions, tears, passion and compassion could be felt and certainly was experienced during this symposium. Participants left with a new level of knowledge and patient insight on sickle cell disease. This is why panels, discussions, seminars, symposiums and conventions are so important. It's a must for all of us who is a part of the village to continue in their education and awareness of this illness, known as Sickle Cell Disease.