Finding resources and others who understand what you’re going through can be challenging when you have a rare disease. Nonprofit organizations can be a great way of connecting with a community of patients, caregivers, and doctors. In this interview, Dr. Brian Koffman spoke with Karen Jones, executive director of wAIHA Warriors, a nonprofit dedicated to helping patients with warm Autoimmune Hemolytic Anemia (wAIHA). They discussed wAIHA Warriors and how wAIHA is connected to chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL).
What is wAIHA?
It is a potentially life-threatening condition where the body destroys its red blood cells. It can cause heart palpitations, breathlessness, extreme fatigue, jaundice, and lightheadedness. It is called “warm” because it happens at the core body temperature. Another type of autoimmune hemolytic anemia is called cold agglutinin disease, which occurs at lower temperatures in the extremities. See our interview with Dr. Irina Murakhovskaya for more details.
Can patients with CLL / SLL also develop wAIHA?
Yes, they can! CLL / SLL is a cancer of the immune system, so the immune system does not function normally. Patients with CLL / SLL can’t fight off infections very well, and they may also develop autoimmune conditions where the body starts attacking its own cells. Autoimmune hemolytic anemia is the most common autoimmune condition in patients with CLL / SLL. In CLL / SLL, about 80% of autoimmune hemolytic anemia is the warm type, and about 20% is the cold type.
What is wAIHA Warriors?
They are a 501(c)(3) organization founded in 2021 with a mission to alleviate the suffering and socioeconomic impact of wAIHA by fostering and facilitating collaboration in education, public awareness, research, and patient engagement. They offer education, support, resources, and community to patients with wAIHA.
Where can I learn more?
More information can be found on the wAIHA Warriors website. They have a quarterly newsletter you can sign up for. They also have a private Facebook page for patients and caregivers and a public Facebook page for industry partners and doctors.
They will also have their first annual meeting on March 24-25th, 2023, in New Orleans. Patients, caregivers, physicians, and researchers will gather in New Orleans to discuss current and future treatments, access to care, Federal and State advocacy efforts, and more. Most importantly, the annual meeting will allow patients to network and share their stories with other community members.
Please enjoy this brief interview with Karen Jones.
Take care of yourself first.
Ann Liu, PhD