Dr. Oluwatoyosi A. Onwuemene
Dr. Onwuemene is a board certified hematologist based in Durham, North Carolina. She specializes in bleeding and clotting disorders, including rare blood clotting disorders such as aTTP.
Thrombotic thrombocytopenic purpura (TTP) is a rare but life-threatening blood disorder that leads to the formation of small clots throughout the body. These clots can block blood flow to vital organs and cause significant damage.
TTP is a general term covering both acquired (aTTP/iTTP) and hereditary (hTTP) forms of the disease.
Please note that TTP, aTTP, and iTTP are acronyms used interchangeably for this condition. We will refer to it as aTTP throughout this article.
To shed light on the challenges surrounding this condition, we spoke with expert hematologist Dr. Oluwatoyosi A. Onwuemene who outlines the complexities of aTTP including the critical role of early diagnosis. This conversation serves as a powerful reminder that early recognition and treatment can save lives.
Black Health Matters: Could you tell us about your day to day practice and what you treat on a typical day.
Dr. Onwuemene: I primarily see patients in the inpatient setting via consults. I also primarily run a health services research program that’s looking at the big picture of how we care for patients with blood clotting disorders, including aTTP.
I don’t see aTTP as often as more common blood disorders like stroke since it is a rare condition. We probably see about 10 to 12 patients per year.
Black Health Matters: How would you identify someone who may have aTTP? What signs, symptoms or labs are you checking?
Dr. Onwuemene: People with aTTP generally feel very sick. Common symptoms may include fatigue, tiredness, headaches, abdominal pain, blood in the urine, bruising, and neurologic symptoms such as mental status changes. Heart attacks, strokes, and kidney damage may also occur.
People with aTTP typically have anemia, or low red blood cell counts, and very low platelet counts. The ADAMTS13 is the definitive test used to diagnose aTTP, but since it can take a while to get that result we would not want to delay therapy.
As we start treatment, the most important thing is waiting to see how well the platelets respond to treatment. That’s kind of the biggest sign that the person is improving and treatment is working.
Black Health Matters: Are there any groups or demographics you see more commonly with aTTP?
Dr. Onwuemene: The median age is forty-three. In general, 70% of people who are diagnosed will be women. When you look at the surrounding population and compare it to the patients we see, there is over representation of both women and African Americans
Black Health Matters: What are the current treatment guidelines for treating aTTP?
Dr. Onwuemene: The treatment that has really improved mortality the most is plasma exchange plus immunosuppression with high-dose steroids started as soon as possible. Therapeutic plasma exchange is a blood separation procedure where you’re removing plasma, which also has antibodies and you’re replacing the plasma with somebody else’s donated plasma.
Black Health Matters: What barriers to treatment or care do Black patients experience? How can we work to eliminate them?
Dr. Onwuemene: In my opinion, I think we see the most disparities with regard to time to diagnosis and the delay in diagnosis. Access to care may play a role in how much workup a person might get or what referral they’re given for the next level of evaluation. We don’t have the data to really help us understand those differences or make those distinctions.
The successful care of people with aTTP is a team sport, and the person with aTTP is really in the driver’s seat. As healthcare providers, we are partnering with them in that care. Everybody has a role to play to decrease disparities.
Black Health Matters: Any final thoughts or advice you’d like to share to encourage those living with aTTP?
Dr. Onwuemene: Education is key for anyone with aTTP and their supporters. Being educated helps you to have a strong voice to advocate more strongly and seek advocates that will partner with you.
Also connect with support groups. It’s powerful to come together with people who have a similar problem or challenge, and to be able to learn from how they are addressing it.
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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 patient’s perspective.
The United States Thrombotic Microangiopathy Alliance (USTMA)
