Community Stories Category: Patient Stories

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor. “It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explains. The bathroom is where Brocks-Capla’s son Kareem Jones died in 2013 at age 36 from sickle cell disease. It’s not just the loss of her son that upsets Brocks-Capla. She believes that if Jones had gotten the proper medical care, he might still be alive today. Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did more than 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. A 2013 study found that life expectancy had dipped to 38 for men and 42 for women in 2005.