Sickle cell disease patient recounts her diagnosis, new activities center opens
Sep. 16—Lifelong Bakersfield resident Nakeisha Harper was told when she would die.
As a baby, her mother pondered why her child cried when cradling her. Answers came when Harper was 3 months old: She had sickle cell disease, and doctors started the ticking clock.
It would be 16 when death would strike, they predicted. If death hadn't claimed her by 16, then Harper wouldn't live past 21. But 40 was the latest, Harper recalls them telling her.
Harper, 38, described her condition to a reporter while getting treatment at Kern Medical for sickle cell disease. She spoke about her painful condition in hopes of raising awareness of the disease, and so people will get help from an activities center operated by the Hina Patel Foundation, which held its grand opening Thursday.
The Sickle Cell Center, 35171 Merle Haggard Drive, will provide patients with a variety of activities to improve their life, Bhavana Patel, the president of the Hina Patel Foundation, said before the grand opening. The foundation is named after Patel's daughter, who died in May 2010 after living with sickle cell disease.
"(Hina Patel's) beauty is reflected in the ongoing legacy, in the beautiful gift that you are giving to our community," Bakersfield Mayor Karen Goh said at the grand opening Thursday. "And the beautiful gift is you're caring for persons and their families who are affected by this challenging disease."
Sickle cell disease is a genetic blood disorder that affects hemoglobin, the protein that carries oxygen throughout the human body. Typical red blood cells are round, but those proteins affected by sickle cell disease turn into a crescent and clog arteries and veins, Patel said. Blocked blood flow causes immense pain for patients.
Pain is a reality Harper lives with daily. She barely eked out words while speaking with a reporter, and equated her pain on a good day to getting run over by an 18-wheeler.
The highest level of pain she suffers is like attempting to squeeze a golf ball through veins, Harper said while machines beeped in the background of the phone call.
"I literally thought I was cursed or tarnished" when I was younger, Harper added.
Her mother attempted to give her Harper the most normal childhood possible, Harper said. But visiting hospitals about 200 times before the age of 5 and riding in a helicopter to hospitals from the school playground after passing out differentiated Harper from her classmates.
Harper's pain fluctuates on a daily basis. At times, she can manage her pain levels — when nothing helps, she heads to the emergency room. She sadly noted that some doctors eye her suspiciously when she's in pain asking for medication by stereotyping her as a "pill popper."
Her voice breaks as she recalls asking doctors to simply stop the pain, and becoming skeptical when told sickle cell disease is the culprit.
"We know we're not going to get that fair treatment," Harper said.
She also manages her pain by going to the Sickle Cell Center and participating in activities to distract her mind. Patel said she teaches attendees how to cook healthy meals, vital to survival with sickle cell disease. Other activities include watching movies, karaoke and painting nights. It's open from 6:30. to 8:30 p.m. every Thursday.
"It's a sense of belonging," Patel said. "When you are walking into the center, you just get these positive vibes."
Harper credits surviving for decades longer than expected because of her children. She gets up every day, excited to see their sporting events and hear about their day. Her lifelong dream has been to get married, and she is engaged to the man of her dreams, she added.
"I am excited every day, just waking up," Harper said.
Editor's note: The address for the Sickle Cell Activities Center should have said 35171 Merle Haggard Drive.
You can reach Ishani Desai at 661-395-7417. You can also follow her at @_ishanidesai on Twitter.
