by James Walker:
I have known about sickle cell disease for years but sometimes you don’t realize how deadly a disease is until the shock of death drives it home.
The Sunday prior to Thanksgiving last year, I wrote a column, “Family? On Thanksgiving, we mourn and cheer,” that it would be a day of mixed blessings for my family.
It would be our first holiday together after the recent passing of my older brother Charles — and while we were still mourning him, my nephew Isaiah was fighting for his life as sickle cell disease wreaked havoc on his body and shut down his organs .
We had lost Charles but we still were hopeful for Isaiah, whom we affectionately called “Zeke.”
But the day before Thanksgiving, that hope collapsed when Zeke lost his battle with sickle cell disease.
He had fought valiantly for two weeks as his organs shut down and he went into and out of a coma. He had appeared to rally, buoying our spirits, before his heart simply lost the strength to fight anymore. His wide smile was lost to us forever. He was only 23.
Needless to say, his death devastated my sister and her husband, Natasha and Robert Smith, and their other children, and it was a emotional time for our entire family group.
We knew Zeke had the disease but his death happened so fast that we, as a family unit, were unprepared.
I probably know more about the disease than the average person by virtue of being an editor but as Zeke fought to stay alive, I realized that I really knew next to nothing. I was not prepared for the destruction it brought to his body or the swiftness in which it took his life.
Dying is part of life and no one escapes it. But it was the lack of information about the disease that took Zeke’s life that prompted this column.
There is a house in New Haven that is poised to open its doors in the coming months that has become very important to me — and should be important to blacks and people of color throughout Connecticut.
It will be home to the Sickle Cell Disease Association of Southern Connecticut’s educational and counseling services. It will be the first sickle cell community house in the Northeast.
And it is sorely needed.
James Rawlings, chairman of the sickle cell organization, has led the charge for years to inform the public about the deadly disease.
“Over the last five years the trait has increased 17 percent because of newborns,” Rawlings previously told Hearst Connecticut Media. “The thing that makes it a major issue [in] social justice is that most of the people with sickle cell are poor, are on Medicaid.”
And too little is known due to a quasi-effort by health officials to inform the public.
Sickle cell is a genetic blood disorder that causes excruciating pain and has life-threatening complications. It is one of the most painful diseases a person has to endure and, yet, it also is one of the most ignored and medically shortchanged illnesses in America.
According to the Mayo Clinic, the pain develops when sickle-shaped red blood cells block blood flow through tiny blood vessels to the chest, abdomen and joints. Patients say the pain is like glass going through your veins.
The disease, discovered more than 100 years ago, affects approximately 100,000 Americans, about one in 365 African Americans and one out of 16,300 Hispanics. It also strikes in lesser numbers people with Middle Eastern, Indian, Caribbean and Mediterranean ancestries.
Nationally, 2.5 million people carry the trait for the disease. The total is 40,000 in Connecticut, with almost 1,000 having the disease.
While many diseases, such as cystic fibrosis and ALS (commonly known as Lou Gehrig’s disease), affect fewer people but raise millions for research, sickle cell still receives nanoscopic research, meager funding and little to no attention from health professionals, drug manufacturers or the public.
That must change — and the black community must be part of that change.
Zeke lived a painful life and died a very painful death. But the last time I saw him at a family reunion, he still had that wide, beautiful smile.
I can’t say if we had more information about sickle cell disease that Zeke would have lived longer. But maybe we could have and would have done more if we had known how quickly it could wipe out life. At the very least, we would have known and found peace in his passing that we donated to research and campaigned for his cause.
I will be making a donation to the Sickle Cell Association of Southern Connecticut in his name and will be offering the organization my support in getting the word out to the black community and Nutmeggers everywhere.
And I urge every black citizen and person of color to join me and do the same.
This is a disease that primarily affects people of color. We own it and it is our responsibility to pull together to help raise awareness and fund research.
I will do it for Zeke.
Trait? Sickle cell disease needs more support from blacks.
Editor’s note: Readers who want to support the home to the Sickle Cell Disease Association of Southern Connecticut’s educational and counseling services, can do so by donating to: SCDAA Southern Connecticut, 545 Whalley Avenue, New Haven, CT. 06511
James Walker is the New Haven Register’s senior editor and a statewide columnist for Hearst Connecticut newspapers. He can be reached at
203-680-9389 or james.walker@hearstmediact.com.
Follow him on Twitter @thelieonroars.