Latoya Thomas

Type of Porphyria

Acute Intermittent Porphyria (AIP)

LATOYA THOMAS shares her porphyria experience,  “I would love the chance to share more of my incredible testimony and tell how I triumphed over this disease.”

Latoya, who suffers from acute intermittent porphyria (AIP), says that she is a “porphyria survivor,” because during her frequent AIP attacks, she came close to death numerous times. To make matters worse, some medical professionals even said “She is African American and could not possibly have porphyria.” Like many other porphyria people, she also was told, "It's all in your head.”With help from the APF, Latoya was finally diagnosed. Latoya promptly became an active porphyria advocate. She even shared her story on Capitol Hill at an APF meeting addressing the FDA. Her testimony included a major plea for more research to find safe treatments or a cure for all the porphyrias. Heightening porphyria awareness in her community and on social media has continued to be her life mission. Latoya inherited AIP from her mother, who also suffers attacks, Three of her four sisters carry the genetic mutation for AIP. Despite having so many in her family being positive for AIP and two of her sisters being symptomatic, they encountered doctors who were not willing to test extended family members as they did not believe the diagnosis. Unfortunately, this continues to be a drawback for many patients, which is why having biochemical and DNA testing is imperative for many.

Thankfully, in these instances, the APF can send forms for free DNA testing in the doctor packet we provide to patients, physicians, family members. This extremely helpful service is provided by Alnylam Pharmaceutical to help families identify the family members who may not be symptomatic but who might carry the genetic mutation. Identifying latent family members is essential as they can pass on the mutation to their children. We sincerely thank ALNYLAM for this vital service .