Finding out that you or someone you love has sickle cell disease (SCD) can be frightening, but learning more about the disease and treatment options can bring back hope. Therefore, the Texas Children’s Hospital’s Sickle Cell and Thalassemia Program places a high priority on educating both patients and the broader Houston community about SCD.
“The first time we see a patient with SCD, we ask about their family experience, if any, with sickle cell disease, listening closely to address concerns or fears as well as to answer any questions,” said Titilope Fasipe, MD, co-director of the Sickle Cell and Thalassemia Program. “We want individuals with sickle cell disease and their families to know that we are there to provide the best medical care as well as to provide them with support and hope!”
Education
Patients with SCD are often followed by a hematologist, a doctor who specializes in blood disorders. It is important for kids and their families to ask questions at the first and every clinic visit.
“We want to make sure each patient and family has the most current information about the treatment of SCD, We also want them to know what signs and symptoms should prompt them to call us 24./7,” said Dr. Fasipe.
During the first visit and those that follow, the hematologist focuses on explaining SCD, and the available treatments for SCD or the symptoms that may result from SCD. Developing a strong relationship with your medical team, creating a supportive environment at home, and seeking out community resources are all important aspects in care for someone with SCD.
Your child’s hematologist may also discuss new therapies that may benefit some patients with SCD or new therapies that are only available through clinical trials. Texas Children’s is on the forefront of bringing innovative therapies, such as gene therapy, to children with SCD. Treatment recommendations will be tailored to the specific needs of each patient. We want to ensure, that we are bringing new hope to families who are impacted by SCD so that we can minimize the complications that may occur from SCD. We provide comprehensive care to and improve the short and long term quality of life for each child, addressing both their physical and psychosocial needs.
The effect of community education
When participating in community events focused on SCD, doctors like Dr. Fasipe strive to improve understanding and correct false beliefs about SCD, such as SCD is contagious, or it only affects Black people. When the community possesses knowledge about SCD and its impact, affected children and families benefit. Texas Children’s will be hosting education and advocacy events this month to celebrate Sickle Cell Awareness Month.
“In our planning of the events for Sickle Cell Awareness Month, one of our primary objectives is to expand our reach – allowing more patients and families to participate. It’s wonderful to engage with families at these events,” said Dr. Fasipe. “We create an environment that facilitates meaningful interactions between families impacted by SCD. The impact of knowing that you’re not alone is incredible.”
Significant disparities in access to care of patients with SCD exist. Community events can help families – who have at times found themselves at the sidelines – by providing them a network that is actively engaged in improving care for people with SCD. Minimizing knowledge gaps and building social support networks are key to improving care across our community for children with SCD.
Encouraged by an understanding of SCD and the families who live with it, groups in Houston have reached out to help the local sickle cell community in a variety of ways, including fundraising for parking vouchers, creating care packages, and donating to ongoing research. The care and quality of life for children with SCD require focused efforts to timely access to care and through investments in research to identify effective, nontoxic strategies to treat or prevent the complications of SCD. Texas Children’s Sickle Cell Program works tirelessly to provide access to care and funding for research for SCD through grants, as well as community advocacy and education.
“The education we provide helps to dispel the myths and provides a platform for advocacy to help improve disparities in care and outcome,” said Dr. Fasipe. “I think everyone leaves more hopeful about the future of SCD after each event.”
For more information or to make an appointment, contact Texas Children’s Sickle Cell Program by calling 1-800-226-2379.