MARGARET CASSELL : THE WARRIOR PRINCESS

Margaret Cassell was born in Cassell Farm, Western Urban – Sierra Leone. She is a university graduate from N’Jala University, Bachelor of Science in Home economics and community development.

Margaret is a model with a cause; she is the second runner up to Miss West Africa, Sierra Leone. A few weeks ago she aspired for The Miss Sierra Leone title with a singular goal: to raise awareness about sickle cell on a national level.

Known to many as the ‘Warrior Princess’ – She knows what it means to stand up and be different. Her most recent pageant landed her right where she had desired to be, with a bigger platform that will enable her support how ‘Sickle Cell’ is viewed.

Sickle cell is a genetic blood disorder that is characterized by a sickle shaped red blood cell with severe and life- threatening complications. You only inherit it from your parents but there are so many myths attached to it.

We spent an afternoon with her discussing her passion to raise awareness on the condition, her experiences and her plans for the future. This story is one woman’s journey through living with Sickle Cell, painting a canvas of hope, resilience and purpose.

JUST A WHILE AGO

I was raised by my mom single – handedly. I grew up in the Gambia and spent 13 years in the smiling coast of West Africa, maybe that’s why I like smiling. Truth is I am always triggered to promote joy and happiness, maybe because I aim for people to treat Sickle cell warriors better. We are not humans waiting to ‘die’ rather full bodied adventurers ready to lead, live and achieve our goals.

There is so much misinformation on the condition, one of the most common is that you’ll die at 21; another is that you are immune to malaria. I think this is why I chose to be a WITNESS, because people will believe my experiences better than a doctor.

GETTING TO KNOW ME

Living with sickle cell has heightened my levels of self-awareness. I am transforming into a more mindful human, this is based on the challenges and joys that I have experienced in this space.

I have learnt to listen to my body more, studying myself to know what triggers a ‘crisis’. Going through college gave me a deeper understanding of sickle cell. Studying, growing up and forming social bonds took a toll on my emotional and physical self. It was only later that I found out that my stress levels were a yo-yo.

I was often ill with malaria and constantly weak. It’s so interesting learning that more hydration and less worry would have done me far better. Today that information will support someone else; this is the beauty of my campaign.

If only we realised how interconnected the mind, body and spirit are, we would guard better! Our immune system depends on this, as someone with sickle cell the stakes are higher when this defense weakens, we become prone to infection.

For example: when you get malaria, you become anaemic and then you need urgent transmission or else you might die. When normal people get malaria, they treat it and they are fine but with sickle cell patients, it is dangerous, you need to attack it.

When I turned 25 years in June, I woke up with bright and shiny eyes- what a milestone. ‘Yellow eyes’ preempt a crisis; it’s a feature that had brought so many questions in the past. Why are your eyes so yellow? What’s wrong with you?

This new year brought me greater awareness, these tiny adjustments are helping me live better:

•  Stay  hydrated.

• Regulate temperatures as extreme temperatures can trigger a crisis.

• Don’t worry – Be Happy: Learn how to deal with stress, find your coping mechanisms. Music helps me a lot.

• Maintain a healthy diet- Because your red blood cells die at a faster rate (after every 15 days) and with normal people red blood cells die after every 120 days.

THE STORY CONTINUES

Research and reading has helped me to believe that it is possible to live to a ripe old age. I believe people age gracefully even with the condition -Judy Gray Johnson is an author that’s in her 70’s living with the condition.

Connecting with other people through the world of pageantry has directed me to help others, that’s my life’s purpose. I now know that I was born to make a change. So many people die without knowing their true purpose on earth. I want to be remembered for something: that she used her voice to impact change.

I want people to know we can make better choices; this would help us avoid sickle cell in the first place. If you know your genotype before getting married, it will prepare you better in terms of compatibility with your spouse.

My genotype is SS so I am looking for someone who is AA. Our kids would be carriers but hopefully they would not make the mistake later on. Truth is, it is really hard to wipe it from a lineage, and it goes beyond a single generation.

I think young people with sickle cell should be open to discuss genotypes and do testing before the sparks start flying. I don’t know if it can be done on a first date though. 

I AM A WARRIOR

This does not end with me; I have managed to build a mechanism around stigma. I survived so many negative comments growing up and in University. You are going to die, why waste time studying? At a point some of my lecturers were so annoyed and  they thought I was trying to dodge exams.

I want young people living with this condition to take courage:

Build a hedge around yourself no matter what people do or say.

Look on the bright side and do not let actions and comments weigh you down.

If you are defeated, there is no way you can stand up.

You have to fight and believe that you were born to live.

You can have a normal life, you can grow old.

I need to work on myself. I’d love to acquire a master’s in genetic counseling. In Sierra Leone we only have one or two genetic counselors. So I believe it will help my advocacy.

The Sierra Leone Sickle cell society is located at 25 Thomas Street -Central Freetown and 88 Kissy Road- Freetown, Sierra Leone . There are so many websites, so many support groups on social media