Meet TTP Warriors Anise and Brianna
Thrombotic Thrombocytopenic Purpura (TTP) is a rare blood disorder, where the ADAMTS13 enzyme does not function as it should, leading to small blood clots in the blood vessels, low platelet counts and destruction of red blood cells that affects between 6 to 10 people in every million.
Anise’s Story
Anise Banks, a passionate health equity advocate from Knoxville, TN, was diagnosed with Thrombotic Thrombocytopenic Purpura (TTP) in 2018, an ultra-rare blood disorder that affects mostly women of African descent. Her journey began with persistent and unexplained symptoms, including severe fatigue, bruising, and low platelet counts, which doctors initially struggled to pinpoint. The complexity and rarity of TTP led to numerous medical appointments, misdiagnoses, and frustrating delays in her care.
Anise’s diagnosis was eventually confirmed after an emergency hospital visit, where she faced the life-threatening complications of this disorder: dangerously low platelets and blood clots. The experience was terrifying and isolating, marking the beginning of her battle with a chronic and unpredictable illness. Motivated by her ordeal, Anise transformed her pain into purpose, dedicating herself to raising awareness about TTP and the broader health disparities that often delay diagnosis and treatment for marginalized communities.
Drawing on her background as a Registered Medical Assistant, Anise became a vocal advocate, sharing her story to educate others about TTP. She collaborated with organizations like the ReeWynn Foundation and Sanofi, participated in speaking engagements, and appeared in publications like USA Today and the Boston Globe. Anise emphasizes the importance of health equity, believing that access to healthcare alone is insufficient without proper treatment and respect for patients of all backgrounds.
Anise’s advocacy extends beyond TTP; she teaches that "health is wealth" and empowers young adults through her role as Career Readiness Program Coordinator at SEEED Knox. Anise’s story is a testament to resilience and a call to action for better healthcare equity, underscoring her belief that a healthy community is a thriving community.
Brianna’s Story
I’m Brianna, a TTP warrior and survivor, here to share my story. Before I begin, I need to preface that I’ve lived with chronic ITP for the majority of my life. I’ve experienced multiple flare ups and many rounds of treatments, but I’ve always been fortunate to find my way back into remission.
Recently, I was diagnosed with TTP and began my new journey to recovery. It all started July 12, 2024, a day I’ll never forget. It was around 2 am when I was feeding my 2 week old newborn daughter when I had a sudden rush of nausea. I was able to get her into her bassinet safely just in enough time before I fell to the ground. My husband jumped out of bed and pushed me upright when I began vomiting uncontrollably. Once I settled I decided to sleep it off hoping that was the end of it. Boy, was I wrong.
The next morning I woke up feeling unwell, covered in petechiae and yellowing of my skin and eyes. With the history of my ITP, I knew the petechiae was not a good sign. After advising my hematologist of my symptoms I was directed to get to the ER asap.
At Yale-New Haven hospital, I was admitted with a platelet count of only 4K and below normal RBC. The first couple days my doctors thought it was a flare of my ITP so I was administered IVIG, steroids and Rituximab. On the third day I crashed. My vision became distorted, my blood pressure through the roof and my blood counts weren’t improving and were getting significantly worse. At this point, my doctors thought it was preeclampsia and/or TTP. I began to receive a magnesium treatment to help with my BP and blood transfusions. I was in rough shape, and I could barely speak or move.
At this time my doctors and hematologists had to keep acting fast. I was sent to have a PICC line inserted into a vein in my neck and brought up to the step down ICU to receive my first Plasmapheresis (Plasma Exchange). A treatment process for TTP which they’ve determined was my diagnosis as I resulted in having an ADAMTS13 inhibitor of less than 4.
With my brain, heart, kidneys and other organs in distress (later learning I also experienced a retinal hemorrhage), due to the clotting caused by TTP, I continued to receive daily Plasmapheresis along with a cocktail of oral medicines, vitamins and additional Rituximab. But with little to no improvement, and my hematologists knowing this first-time-Mom is away from her newborn, they determined additional treatment was crucial. My incredible team of hematologists made a heroic decision to try a new treatment from another medical institution for first time use in a TTP patients. It helped me turn the corner rapidly and led to my ultimate discharge after a 17 day hospital stay. It was a rocky road for the weeks following, but at least I was at home with my daughter, husband and family.
I am happy to share that I entered remission, albeit with a couple of concerning moments that fortunately proved to be temporary — but with relapse still an ever-present concern.
After this experience, I believe it’s my mission to share my journey and help bring more awareness to both ITP and TTP with the hope of helping others living with these rare disorders. You can follow Brianna’s story at @ttp.warrior on Instagram.