HINA’S DREAM: Raise public awareness of sickle cell disease

 

Hina Patel, right, and is shown with her mother, Bhavana, in Bakersfield Memorial Hospital shortly before her death.

Hina Patel lost her battle with sickle cell disease, but her family has not given up the fight.

Bhavana and Sanjay Patel, Hina’s parents, are forming a support group in their daughter’s honor and held a Sickle Cell Awareness Fair on Saturday, Sept. 18, in the parking lot in front of their pharmacy, Hina’s Homecare and Compounding Pharmacy.

No doubt the huge turnout for the event would have pleased the young woman, who died in May of complications from the disease.

The Patels estimate about 250 people in Kern County, Calif., have the inherited blood disorder, sickle cell disease. They hope to alert “at risk” people to the need to receive genetic counseling before they conceive a child. People whose ancestry is from Asia, Africa, South America and Mediterranean countries are “at risk” for carrying genes that allow sickle cell disease to be passed to their children.

And while couples may not realize they are “at risk,” families and health care providers also may not recognize the symptoms of the disease, resulting in treatment delays and increased pain for victims, said Bhavana Patel.

Creation of an awareness campaign and network of support was Hina’s dream. It was the project that earned Hina the Girl Scout’s coveted “Gold Award” when she was a Stockdale High School student. Her family is committed to making Hina’s dream come true.

The 20-year-old died on May 5 after developing complications from a bone marrow transplant performed in hopes of curing Hina’s disease.

Just three months earlier, Hina was the keynote speaker during Houchin Community Blood Bank’s recognition dinner in Bakersfield for blood platelet donors.

“Sometimes I ask, ‘Why me?’ But I know everyone faces bumps in the road,” Hina told donors that night. “I try to keep positive mentally and have hope. I have faith in God. ... Finding my match for platelets is difficult. Houchin has been able to do that.”

Hina received more than 80 units of platelets from Houchin donors during her years-long struggle with sickle cell disease and in the aftermath of the unsuccessful bone marrow transplant.

As her condition deteriorated and she was confined to an isolation room at Bakersfield Memorial Hospital, just weeks before her death, Hina agreed to an interview to talk about her disease, her struggle and the need for better services. Hina was later transferred to the hospital at the University of California, Los Angeles, where she died.

More than 600 people attended Hina’s services at Hillcrest Memorial Park. They included her high school, Bakersfield College and Girl Scout friends, as well as the many people she touched and inspired. Accepted into the University of Pacific’s pharmacy program, she hoped her condition would improve to allow her to attend.

Although both are pharmacists, with extensive knowledge of medicine, Sanjay and Bhavana Patel were stunned when a routine blood test revealed their baby girl, Hina, was born with sickle cell disease.

“I thought there had to be a mistake,” Bhavana recalled during an earlier interview. “We thought that was mostly an African American disease.”

But the young couple, who are both of Indian descent, learned that the hereditary disease also is found in people from many regions. Neither Sanjay, nor Bhavana knew they carried genes that could combine to inflict their baby with a potentially deadly disease.

“At first we were in denial,” Bhavana said, explaining that Hina appeared and behaved as a healthy, normal baby. But as Hina approached her first birthday, she had her first “pain crisis.” Her feet and hands swelled up. “It was very painful. All she did was cry. Then we knew it was real.”

As the years passed and Hina’s condition worsened, Sanjay and Bhavana began investigating the option of a bone marrow transplant for their daughter. Her severe and repeated pain episodes and the availability of a matching donor qualified her for the procedure, which was performed in 2008.

Despite her medical struggles, Hina did well in school. New medicines provided periods when her pain was controlled and she could join in activities with classmates. As a teenager, she excelled in her classes. But medical complications in her senior year required her to finish her studies at home.

Improving the quality of care and support for people with sickle cell disease was Hina’s reason for wanting to become a pharmacist, her mother said. Hina’s dream was to help the hundreds of people in Bakersfield who are suffering in silence.

A version of this story written by Bakersfield freelance writer Dianne Hardisty appeared in The Bakersfield Californian on Sept. 16, 2010.