Austin, Texas is the headquarters of the Sickle Cell Association of Texas: Marc Thomas Foundation. They are a small organization, with offices in Houston and San Antonio, who are doing great things for people with Sickle Cell Disease (SCD) and Sickle Cell Trait (SCT) in those communities. This organization works with DSHS to notify parents if their newborn tests positive for sickle cell trait; provide support, advocacy, and assistance to families dealing with SCD or SCT; provide education and outreach to families and the public about SCD, SCT and blood disorders; provide SCT testing to the public; an annual week-long camp for children ages 6-14 who have SCD; as well as annual fundraising events such as a walk and “Cell-A-Bration” in the park.
When I was there I spoke with Emily, the headquarter’s very busy Social Worker, and Yesica, the headquarter’s very helpful and knowledgeable receptionist. While they are uncertain of the prevalence of SCD and SCT in their service areas, Emily noted that HbSS (Sickle Cell Amenia) and HbSC (two different sickle cell genes – typically the symptoms of HbSC are less severe than those of HbSS) are the most common types of sickle cell disorders that they see.
Yesica informed me that there is a significant portion of the Hispanic population with SCT. This reality makes their community outreach even more important. Most people believe that SCD is a disease that only affects people of African origins, but the reality is that anyone can get SCD or be a carrier of the gene, SCT. SCD is a genetic disorder, it only requires that the gene be passed on, ethnicity and skin color do not matter. People with SCT typically don’t know that they are a carrier of the trait because they do not have any symptoms of the disease. According to Sickle Cell Association of Texas’ brochure, 1 in 12 African Americans are carriers of SCT and 1 in 36 Hispanics are carriers of the trait.
This organization also works with local hospital emergency rooms to make sure that staff are knowledgeable about SCD and the care these patients require. As I mentioned in my What is Sickle Cell Disease post, SCD is uncommon enough that not all healthcare professionals are fully versed on the needs of a person in a vaso-occlusive crisis and sometimes these patients can be labeled as drug-seeking when they show up in the ER in a pain crisis. This reality strengthens the fact that we all need to be more aware of this disease and those impacted by it.
Thank you to everyone at the Austin office for taking the time to talk to me, and to the Sickle Cell Association of Texas for the amazing work you are doing for the people in Austin, Houston, and San Antonio!