Kansas City, Kan- Lynda Ogah shared her experiences living with sickle cell disease, including frequent hospital visits and the toll of sickle cell crises on her daily life.

She spoke about new gene therapies, such as Casgevy and Lyfgenia, which offer fewer side effects than bone marrow transplants.

These treatments, which cost $2–3 million, are covered by insurance for some patients.

Lynda also emphasized the importance of community support and the ongoing efforts to make these life-changing therapies more accessible.

Lynda Ogah, sickle cell patient

• Lynda Ogah shares her personal experience with sickle cell pain, emphasizing its variability and the impact on her daily life.
• She talks about the frequency of her hospital visits and the ongoing gene therapy treatment she is receiving.

Dr. Leyla Shune, Hematologist and Oncologist, The University of Kansas Cancer Center

• Dr. Leyla Shune explains the genetic condition that causes red blood cells to deform into a crescent shape, leading to blockages and severe pain.
• She describes the treatment for sickle cell crises, including pain management, IV fluids, and addressing underlying infections.

Sarah Steele, BMT Coordinator, The University of Kansas Cancer Center

• Sarah Steele discusses the differences between gene therapies and bone marrow transplants, including time commitment and side effects.
• She expresses their hope for more patients to benefit from gene therapies and the potential for improved quality of life.

Dr. Dana Hawkinson, Medical Director of Infection Prevention and Control, The University of Kansas Health System

• Dr. Hawkinson discusses the various tick-borne illnesses, including Ehrlichiosis, Rocky Mountain Spotted Fever, Bourbon virus, and Heartland virus.
• He provides recommendations for preventing tick bites, such as wearing protective clothing, using EPA-approved insect repellent, and checking for ticks after outdoor activities.

Thursday, May 14th is All Things Heart:

Thursday- Celebrating Cardiac Nurses

Cardiac nurses literally work heart to heart with their patients. Go behind the scenes to learn about the high-stakes world of heart care and the nurses who never miss a beat.