Cameroonian-born health advocate Marie-Claire Kofi says women living with sickle cell disease risk having menstrual pain, fertility questions and other health concerns overlooked when every symptom is attributed to their diagnosis.
Marie-Claire, founder and CEO of Plasma of Hope, spoke about sickle cell and women’s health at the European Sickle Cell Federation’s workshop in London on 6 October. In a LinkedIn post after the event, she described years of gynaecological challenges and a response she said women hear too often: “It’s just your sickle cell.”
“When everything is attributed to one diagnosis,” she wrote, other concerns can go unexamined. Marie-Claire said she had lived through that experience and had heard similar accounts from women she has supported.
Looking beyond one diagnosis
Sickle cell disease is an inherited condition affecting red blood cells. It can cause episodes of severe pain, anaemia and other health problems. Symptoms vary from person to person, making it important to listen when someone says a pain or symptom is different from what they usually experience.
That distinction appears in UK clinical guidance. For patients with sickle cell disease who attend hospital with acute pain, the National Institute for Health and Care Excellence says clinicians should assess whether the pain is a sickle cell episode or whether another diagnosis is possible, particularly if the patient describes it as unusual.
Marie-Claire’s appeal extends to concerns that women may raise over months or years. She wants menstrual symptoms and fertility questions considered in their own right, alongside their sickle cell care. University College London Hospitals provides separate guidance on sexual health, fertility advice and preparing for pregnancy for people with the condition.
“This isn’t about blame,” Marie-Claire wrote. “It’s about looking at the whole woman. Listening fully. Investigating each concern on its own merit. Believing her.”
A call for research and partnership
Marie-Claire said research into women’s health and sickle cell disease has not yet caught up with what many women report from experience. She invited researchers, funders and other partners to work with Plasma of Hope on the issue.
The workshop also featured Dr Mary Clarke on gene therapy, Dr Rossby Awadzi on sickle cell retinopathy and Dr Claudine Matthews on nutrition. Nedda Al-ammar and Miriam Santos Freire presented a session titled “Sickle Cell Has No Colour.”
In July, the University of Wolverhampton awarded Marie-Claire an Honorary Fellowship for her work supporting people affected by sickle cell disease. The university said Plasma of Hope provides health education, advocacy and community support in the West Midlands and beyond. Kofi also works with its School of Nursing, sharing her professional and lived experience with students.
“She is more than her sickle cell,” Marie-Claire wrote at the end of her post. “Let’s make sure our research, and our care, reflect that.”