Anise Dnyez Banks
Anise was diagnosed with aTTP in 2018, and is deeply committed to advocating for awareness and better care for those affected by aTTP by promoting health equity.
Living with acquired thrombotic thrombocytopenic purpura (aTTP) is a journey. For many, including Anise Banks, the path to diagnosis can be complicated and overwhelming. In this interview, Anise highlights her personal story as a patient and advocate who has bravely navigated the challenges of living with aTTP.
Her insights shed light on how to embrace the journey, advocate for yourself or a loved one living with aTTP, and the importance of education.
Please note that TTP, aTTP, and iTTP are acronyms used interchangeably for this condition. We will refer to it as aTTP throughout this article.
Black Health Matters: Can you share your personal journey with aTTP from initial symptoms to diagnosis?
Anise: I experienced bruising, headaches, fatigue, and changes to my mental state. My symptoms went on for about one month before I was accurately diagnosed and treated during an emergency room visit. I had a stroke there prior to starting treatment, but because my mom was there she handled everything when I physically was unable to advocate for myself.
Black Health Matters: What were some of the challenges you faced during the diagnostic process?
Anise: The top challenges were the frustration of not getting answers and having to go back and forth to the emergency room week after week. Nobody knew what was going on, but I knew I wasn’t well. I felt like I knew I was dying.
Black Health Matters: Do you think having your mom’s support during that crucial time made a difference in your outcome?
Anise: I do. I feel like my outcome would have been bleak if my mother wasn’t there to be my advocate to speak up for me. I tear up every single time I share this, but my mom really stepped in to tell the doctors what was going on and what was needed. Her strength in advocating for me, I think, played a major part in saving my life.
It’s so important to have an advocate. It can be a friend, family member, spouse, or partner. Anyone that’s close to you and knows you well enough to speak on your behalf.
I suggest preparing an advance directive so if something happens and you are not able to speak for yourself, the doctors and healthcare officials have a guide to follow.
Black Health Matters: What is your day to day like now living with aTTP?
Anise: I’m in remission and want to keep it that way. It’s taken me six years to get here. I still have anxiety, depression, and cognitive issues from what I’ve gone through, but now when I go to the doctor they tell me I’m good and they’ll see me in six months.
Black Health Matters: Can you share more about your aTTP advocacy work?
Anise: During my journey with aTTP my faith got me through. I knew if God got me through I was going to spread awareness. It started out as just me just sharing my story using the aTTP hashtag on social media which led to me being asked to share with larger groups.
Black Health Matters: How do you think healthcare providers can improve the care and support they offer to aTTP patients?
Anise: Healthcare providers could partner with a liaison like a community health worker to help educate patients and empower them to advocate for themselves. It’s just not all on the doctor. It takes a joint effort to make sure that we all come together to have the opportunity to improve our health.
Black Health Matters: Any final thoughts or advice you’d like to share to encourage those newly diagnosed or living with aTTP?
Anise: Educate yourself, join a support group, and find a therapist. Support groups can be helpful in learning how to advocate for yourself and knowing what questions to ask. A therapist can help you cope with the mental impact of living with a rare disease.
I’d also like to give my spin on aTTP and what it really stands for. It stands for trust the process, trust the progress, and take the power. Thrive towards prosperity because there’s life after this diagnosis.
The third Saturday in September is recognized as International TTP Day. Visit the websites below to learn more about aTTP, find a support group, and explore resources.
Click here to learn more about aTTP from a provider’s perspective.
The United States Thrombotic Microangiopathy Alliance (USTMA)
