Adult sickle cell clinic in Central Valley

CLOVIS, Calif. (KFSN) -- When you look at Alexa, she doesn't look sick.

But the 21-year-old college student has been dealing with a rare genetic condition since she was a baby.

Sickle Cell Disease is a health condition that causes a person's red blood cells to become C-shaped or sickled instead of round.

It can lead to several complications, such as kidney failure or stroke.

For Alexa, it causes extreme pain.

"It's like a stabbing pain," she said. "Stabbing and pinching are the main factors in that pain. It starts in my lower back, but then it gravitates up to my neck. Just everywhere -- my joints, every joint in my body that you could possibly think of."

This pain has sent her to the hospital multiple times, sometimes for weeks-long stays.

Alexa says medication helps manage her condition, and she has regular appointments at UCSF Fresno's Sickle Cell Clinic at the Community Cancer Institute in Clovis.

"I have plenty of sickle cell patients here in the Valley," says Dr. Stephanie Harris Mercado. "There are still more that are coming in who didn't know that our sickle cell clinic was here. Probably every month, I'm getting another five patients and getting transfers from Valley Children's Hospital."

Since the FDA approved two gene therapy treatments for sickle cell disease, Dr. Stephanie Harris Mercado and Dr. Mohammed Sani Bukari have been talking to patients to see who they can refer for it.

"It's a potential cure for this patient," Dr. Bukari said.

The first therapy works by editing the DNA in a patient's stem cells, which are responsible for making the body's blood cells.

The second provides patients with a modified version of the gene that produces a form of hemoglobin that helps resist the clumping of the blood cells

While Alexa isn't considering the treatments, she believes it will be a game-changer for patients whose lives have been disrupted by the disease.

"I think it's really, really good for the patients that really need it," she said.

The Sickle Cell Clinic is now waiting to see which therapy will be covered by health insurance and what plans will cover it.

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