Until recently, the Valley’s more than 570 adults with sickle cell disease had to seek care outside the Valley, in the Bay Area or Los Angeles Region. But, that is no longer the case. In July, the Sickle Cell Anemia Clinic opened in the Community Cancer Institute to provide comprehensive care to patients who suffer from this rare disease.
Ragina Bell is a new patient of Dr. Mohammed Bukari’s. She was born with sickle cell anemia, a genetic disorder in which red blood cells are misformed, making it difficult to carry oxygen throughout your body. The 32-year old mother used to have to travel to the bay area every month to get blood transfusions, replacing her abnormal red blood cells with healthy ones.
“It’s one of those invisible illnesses, it’s like you have good days and bad days. The pain, it hurts on the bad days. You get a lot of joint pains and chest pains back pains. I get a lot of my pain in my legs and my lower back,” said Ragina.
UCSF Fresno’s Dr. Bukari leads the Sickle Cell Anemia Clinic at the Community Cancer Institute.
Dr. Bukari said, “Pain is the biggest symptoms. But, in addition, most patients actually with sickle cell die from iron overload so it’s one of the things that we actually monitor real closely and start them on medication to lower the iron.”
Sickle cell anemia causes red blood cells to lose their flexibility, said Dr. Bukari, so they’re unable to squeeze through small blood vessels. The cells curve in a sharp, crescent or sickle shape and clump together rather than delivering oxygen to tissues through the body’s tiny blood vessels. This is what causes the excrutiating pain many like Ragina feel. The Fresno area has higher sickle cell rates than california as a whole…
32 per 100,000 people compared to california’s 26 cases per 100,000. It’s a disease that affects some races more than others.
“Majority of the patients are people of African or African American, but there’s also a significant amount of Hispanic or Hispanic ancestry as well,” said Dr. Bukari.
The clinic was made possible by a grant from the California Department of Public Health. Dr. Bukari said he’s thrilled to have this program now available to provide specialized care and support to people in the Valley who are battling sickle cell disease.
Dr. Bukari himself carries the trait, and said he’s passionate about spreading awareness about sickle cell disease.
“Part of this is to establish a network of centers around California where patients living with sickle cell can access comprehensive care with the goal of improving the quality of care and allow knowledge sharing among the providers as well as increase utilization of newer disease modifying medication,” stated Dr. Bukari.
For patients like Ragina, this clinic means she won’t have to leave her young sons every month for treatment. One less thing to worry about as she continues her lifelong fight with sickle cell anemia.
“I’m excited for it because I’ve been living in Fresno for a while, for years, and I drive back and forth every month to get my transfusions so it would be less of a hassle to be able to do that here,” said Ragina.
According to the Centers for Disease Control and Prevention, the only cure for sickle cell disease is a bone marrow or stem cell transplant. Dr. Bukari said new treatments offered in their clinic will include stem cell transplants and gene therapy.
For more on Ragina’s story, click here.