Vanessa Hughes remembers cheerfully playing childhood games one minute and running to her parents writhing in pain the next. During those early development years, Hughes was studying her ABCs while also learning how to moderate her playtime to reduce the risk of going into a painful sickle cell disease crisis.
Often it was trial by fire.
“I didn’t know what was going on. I just needed it to stop,” recalls Hughes, now 24 years old. “There were times when I would have a pain crisis and my dad would carry me to the backyard so I could feel the cool air because I would be running a fever. In those days, all they could do was give me Tylenol so I wouldn’t end up in the ER. Still, most often I would.”
More than 250 people with sickle cell disease live in San Diego. The number may seem small, but its impact is severe.
Sickle cell disease is a lifelong condition, passed down from a parent’s genes, resulting in abnormally shaped red blood cells that are hard, sticky and clump together, which reduces the blood’s ability to carry oxygen throughout the body and to vital organs.
“The most common manifestation of this disease is pain, often in the bones, caused by occlusion of small blood vessels by sickled