HOUSTON – Of the estimated 180 Texas babies born each year with sickle cell, a rare genetic blood condition, approximately 40% are in Houston, according to Dr. Titilope Fasipe, chair of the Houston Sickle Cell Collaborative.
In a news release Tuesday, the Houston Health Department said Houston has more diagnoses than in any other region of Texas. The condition ultimately causes organ damage, including severe episodes of pain that can last up to a week and can result in multiple hospitalizations throughout a lifetime.
Kennedy Cooper, of Pearland, is one of the estimated 1,500 children in Houston living with sickle cell. The 14-year-old can’t play sports because of the damage the disease has already done to her bones and she makes decisions daily to stay healthy instead of acting like a young teen.
“It is painful sometimes if I do end up clotting and I have to miss school or something like that but, I don’t know, it’s given me a lot of perspective,” Cooper said.
She was diagnosed as a baby and she does well with current medications but Dr. Fasipe is one of her physicians at Texas Children’s Hospital and said we need more research, funding and medicines to guarantee all patients a long and healthy life.
Dr. Fasipe is a sickle cell patient herself. She said her only other family member to also have the disease died at 17.
“I’m one of the ones who made it to adulthood and I’m happy but I’m also respectful of the fact that so many more did not and that’s part of what pushes me at times,” she said.
Dr. Fasipe and Kennedy actually take the same pill once a day, it keeps what they call “crisis” at bay. Those crises include multiple stays in the hospital every year for things like pain, fever, infection. The medication they take this is one of the only treatments known to work well and it doesn’t work for everyone.
“If they had a pill that could cure sickle cell that would be nice,” Cooper said.
“We know bone marrow transplant can cure sickle cell but not everybody has a match. Especially if you’re in a minority population,” Dr. Fasipe explained.
The 2020 Sickle Cell Advocacy Summit, a free virtual event open to the public on Oct. 8, aims to bring awareness to the forefront for increased resources and funding that could hopefully bring about more treatments for sickle cell patients.
The annual summit brings together renowned advocates, congressional champions, disease specialists, policymakers, and other notable speakers. The summit is scheduled from 8 a.m. to 3:30 p.m.
More information and registration is available online. Participants who are impacted personally by sickle cell disease are encouraged to share their stories.