Meet Sandhya Devi Moraes, a sickle cell warrior from Zambia. She has Sickle Cell Thalassemia while her brother neither has sickle cell nor the trait. She’s a Secondary School teacher living in the northern part of Zambia. Sandhya has been a teacher for 21 years. We asked Sandhya to tell us more about her self, her earlier years living with Sickle Cell Disease, her challenges, her routine management protocols, her career progression, and many other topics. See her responses here:

How old where you when your parents knew that you had Sickle Cell Disease?

• My parents first found out about SCD when I was 6 months, then when I was three months old, a confirmatory test was conducted at University Teaching Hospital in Lusaka, the capital city of Lusaka.

What are some of the challenges you have faced with sickle cell and how has it impacted your life?

Challenges mostly have been poor health and also the stigma that comes with SCD. I have lost friends and I have been called lazy and stuck up. It took me time to accept that this was my life but with the support of my parents I came to see that I could do anything I wanted to as long as I am okay. I have learnt that in spite of the pain and weakness that comes with sickle cell, I can do a lot.

How do you manage SCD and still maintain a thriving career?

Living with a chronic illness is not easy, the most important thing for me is to have a positive mindset, as I said, in spite of the pain that comes with SCD, I have told myself no matter what I will still make it. In addition to this,  I make sure I take I’m compliant with taking my medications where possible, I say this because due to lack of Hydroxyurea, I have been unable to be consistent with taking this medication. I ensure that even with my poor appetite I have to eat otherwise, it will affect my health. Whenever I can I go to Lusaka the capital city of Zambia for health check-ups. I also try to drink as much fluid as I possibly can. And most of all, I listen to my body. When I don’t feel well, I don’t push it. I have had different sickle cell complications including Avascular Necrosis and subsequently having a hip replacement. All you need to do is believe, have faith and compliance, compliance with medications and routine check-ups.

What Are Some Of The Struggles You Have Faced With Avascular Necrosis And What Advice Do You Have For Warriors Going Through The Complications?

I wasn’t told I had avascular necrosis when it started. It took close to ten years before I found out. I was constantly in pain and I developed a bad limp. This wasn’t easy for me especially since I am a teacher. My advice is to go for surgery. Because surgery outweighs the pain of AVN. Before surgery doctors will ensure your blood levels are good before operating. And like for me, I had an infection after surgery so the doctor kept me in hospital longer than I expected. But after the surgery and the physiotherapy, I was so much better. I don’t regret it at all.

How Do You Address Stigma Towards People Living With Sickle Cell Disease?

Stigma has been difficult to address because people don’t always listen to what you say. They have made up their minds. I try to talk to people and make them understand that what they think isn’t always what is real. I have also tried to write about it. To help people understand what we go through.

What Inspired You To Start Raising Awareness On Sickle Cell Disease?

I started raising awareness when a friend of mine told me that talking about sickle cell to him helped him understand a small part of what we go through. He opened a page for me and told me to write. So that’s how I started talking about sickle cell and talking about my life experiences. Another inspiration was a friend from Uganda who is also an advocate. He also told me to write about my experiences. I never liked it, but if it helps, I am glad.

What Is Your Perception Of Sickle Cell Awareness In Zambia?

Sickle cell awareness in Zambia leaves much to be desired. People still have a negative attitude towards sickle cell. I feel there is a lot more that can be done to help people understand. Many think sickle cell is not a big issue. But in my opinion it is a very big deal. We go through so much and out health system doesn’t really help us.

Is There Anything else that you would want to tell other Sickle Cell Warriors?

For the warriors out there, it is important to be okay with this disease. It is important to do what is best for you. It is important to listen to your body and ignore the negative attitude people have towards this disease. We can do so much more than what people say we are.

We would like to thank Sandhya for sharing her experience with sickle cell disease with us. Follow Sandhya’s blog here and be sure to like her Facebook page.