CAMEROON: Menstruation and Sickle Cell

As a woman living with Sickle Cell Disease, Ayuk Besong Anne-Chantal says we can better advocate for girls with unique menstrual development.

On World Menstrual Hygiene Day 2022, there were numerous messages on the need for education, access to menstrual hygiene kits, and an end to the stigma around menstruation that keeps girls away from school. But I noticed one message was missing: the importance of menstrual health education or counseling for late bloomers, especially for girls with rare diseases or special health conditions such as Sickle Cell Disease (I call them warrior girls).

Sickle Cell Disease, or SCD, is a genetic red blood disorder that children get from both parents. The disease makes the red blood cells sickle or deform to take a c shape, which makes it difficult for these cells to flow through the veins. The result is debilitating pain and a lack of oxygen to various parts of the body. This in turn can stunt growth and even cause organ malfunction — and in the worst-case scenario, death.

Delayed growth and puberty is often overlooked in the list of Sickle Cell Disease complications. For girls, it may include late menstruation. The lack of education in this area for warrior girls is often devastating. Imagine being an 18-year-old warrior girl who has not yet started her period, taunted by schoolmates who have had theirs.

Imagine this young warrior girl growing up believing that she will not menstruate because of Sickle Cell. Then years later, it eventually happens, and she is unprepared. The beginning of a girl's period is usually a time of stress and anxiety. Imagine that time for a girl who is already stressed about not having enough blood because of the genetic red blood disorder she lives with. For such a person, losing blood that they do not have is worrisome.

This is precisely what I and many women living with Sickle Cell who are my age have gone through. In my case, menstruation was a nightmare that made me decide to block it out of my mind. It was not because it was painful, but more because it did not arrive when it should have. 

While my secondary schoolmates were already sharing tips on using a tampon or a pad, I had nothing to show. No blood, no breasts. I felt hurt by other girls who told me not to change in the same washrooms as them because they were not sure I was a girl. I felt humiliated by the older girls’ jokes about my flat chest and skinny body. This torture went on from secondary school through university. 

Imagine the relief I felt when my period finally showed up halfway through university. But my joy was short-lived. It came when I had no female support — my mum had died several years before and my sisters were grown and far away. There was no internet like there is now that permits girls to easily access information.

I still remember the lady who helped me during my first period. She was in her final year at the same university. She not only saved me from lots of embarrassment and mishaps but also became an honorary sister. She taught me about periods, how to buy my first pad, how to act in class if it started, and how to hide a pad in the side pocket of my school backpack. 

But even with that, I lacked the knowledge to manage my periods and health. Each period was a nightmare as I feared my body was losing the seven grams per deciliter (g/dL) of blood I had been surviving on most times. I learned to manage this alone as I grew up, got periods, and endured Sickle Cell crisis episodes. 

Even now, I am still learning. I felt I should leave a word for the late bloomers like me:

• Do not worry. Your period will come, and when it does, your experience will be unique, like the warrior you are.
• Do not fear losing a bit of blood. If you feel unwell, don’t be afraid to seek medical assistance.
• Get counseling and tips from other lady warriors. No topic is taboo in the Sickle Cell Disease (SCD) community.
• Get medical advice on managing your period and health, especially in a Sickle Cell crisis.
• Get education on what menstrual hygiene products are out there and which one best suits your period.
• Finally, smile. You are beautiful, even if that menstrual period is late. Let no one tell you the contrary.

I hope that in creating these messages and working on these issues, menstrual health champions will factor the needs of this group with unique menstrual development into their outreach. We can ensure no girl is left behind regarding menstrual hygiene education, access to menstrual hygiene kits, and support.

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