In 2014, Joan Powell was busy handing out candy to the tiny ghouls and goblins of her neighborhood, but the scariest thing that Halloween was a phone call.
It was her doctor, who told her to take a break from trick-or-treaters and sit down for what came next. As Joan’s heart began to pound, her doctor delivered the diagnosis. Joan had myelodysplastic syndromes or MDS—a rare blood disorder that is considered a type of cancer.
At eight years post-diagnosis, Joan is a powerhouse when it comes to advocating for her condition, treatment and the advancement of scientific research. She’s traveled “from the beaches of California to the Capitol steps,” as an advocate for patients with MDS. Since 2015, Joan has been a volunteer Patient Advocate and member of the Patient Education Council for the Aplastic Anemia and Myelodysplastic Syndrome (AA&MDS) International Foundation, MDS Foundation and the Patient Advocate Foundation. She is the AA&MDS International Foundation and the MDS Foundation Support Group Facilitator for California.
It has not always been easy for Joan to adapt to the realities of her condition. Her treatment involves frequent blood transfusions, self-administered injections and expensive medication. To stay motivated, Joan adopted a motto, “get busy living,” borrowed from The Shawshank Redemption. It is a maxim she embodies to the fullest. She believes her role as a patient advocate is especially important as a voice for the voiceless and the underrepresented. Joan states, “we are not just patients, but partners and participants in this journey.” And it is extremely important for patients to have the essential tools to navigate the maze of MDS.
Joan believes BrightInsight’s mission aligns with the needs of MDS Patients, and that its products are positive resources in the broader digital world for patients. In her role as a Patient Advisor for BrightInsight, she informs the design and user experience of digital solutions to optimize the daily management of disease so that patients like her can pursue a better quality of life.