Sickle Cell Disease Initiative
Although there has been increased discussion regarding Sickle Cell Disease (SCD), which predominately affects those of African American descent, there remains a tremendous and important responsibility to also share information about the Sickle Cell Trait (SCT) (which is where the SCD starts). It is important that those who carry the SCT become aware of their status and the risk of passing the gene should they have a child with someone who also has the SCT.
In most instances, an individual with the SCT is generally healthy and hasn’t experienced any medical conditions associated with or considered related to the SCT. If so, symptoms may have been undetected because there was no previous diagnosis and the individual has no knowledge of their status. Approximately 2 million Americans or 1 in 10 – 12 African Americans carry the SCT. It is important that all those who are of African, Mediterranean, Hispanic, Asian, along with Sicilian, Greek, Italian, Indian and Turkish ancestry, although affected in smaller numbers, need to know their status.
After hearing that I am committed to raising awareness to the SCD, which I refer to as the “Forgotten Disease” simply because there has been little done to educate our community about this inherited blood disorder, it’s amazing how many people have approached me to share their stories. One couple approached me at a family cookout stating it wasn’t until after the birth of their first child that they became aware that both of them had the SCT. That’s when they became educated about the SCT and how to care for their child who had SCD. They also expressed interest to partner with me in this SCD initiative and share their story to help spread the word about SCT and SCD.
I’ve found there to be many people who know someone within their circle of friends and/or an acquaintance that has SCD or SDT. As such, it is paramount that, as Prince Hall Masons, we use every opportunity we have to raise awareness to this inherited blood disorder that blocks the flow in blood vessels resulting in lung tissue damage, pain episodes and strokes. It also causes damage to most vital organs which can also result in bacterial infection requiring hospitalization. I am encouraging all Prince Hall Grand Lodges, and other Prince Hall Bodies to lift your voices. Join in bringing awareness and education in your jurisdiction by hosting SCD seminars, blood drives, special events, and partnering with your local Sickle Cell Disease Association of America (SCDAA) chapters and other participating organizations in making this an important issue that must be discussed and treated with urgency. Do you know your status? Let’s start with you. You could have the trait and not be aware of it.
Malcolm E. Harris, No. 58
Most Worshipful Grand Master
Most Worshipful Prince Hall Grand Lodge of Pennsylvania