Clara Lupenga is my name and i am in my twenties. I am a sickle cell warrior, advocate and i am from Lusaka Zambia.

1.When were you diagnosed with Sickle Cell Disease and when did you find out that you have Sickle Cell Disease?

I was diagnosed with sickle cell at the age 14 after living a life of pain since birth I used to go through crisis’s, I’d have chest and back pain for many years I had that pain and my parents didn’t suspect I had sickle cell and honestly I thank God for bringing me this far. After running a few tests they found out I had sickle cell. It wasn’t an easy journey for my family and I but my mother made sure I took my medicine on time. As time goes went by I learnt how to take care of myself. I knew about sickle cell disease as a child my diagnosed came as a surprise. At the time, my parents were not aware of anyone else who had sickle cell. My parents were frightened when I was diagnosed because they didn’t know much about sickle cell disease and were afraid they wouldn’t know how to take care of me properly. Whenever I had a crisis I wondered what sin or wrong I ever committed to deserve and some days I wondered why some people were so cold towards me.

2.What are some of the challenges you faced going up with Sickle Cell Disease?

As I grew older I wondered why I had to go through all this growing up with a chronic condition like sickle cell, I sometimes find it difficult to look in the future what exactly will my future be like will there there be more hospital trips ? More pain? More sadness? Sickle cell is a very challenging journey I have been misjudged called all sorts of names because of it . As a child who lives with sickle cell, growing up was hard with the stigma and discrimination was from every handle i always knew I was different I wasn’t allowed to do things every other kids will do. I was very skinny so I got picked on by my peers who called me names. I felt like I was a huge burden on my family whenever my crisis starts especially in the middle of the night my mum wouldn’t sleep she call her big brother to come as she try to put me on her back as old as I was as she try and ease the pain and start to take me to the hospital as she try to comfort and pray for me and most of the times she will have to sleep on the hospital chair or floor because there was no provision for patients families.

3.How has Sickle Cell impacted your life and how do you manage keeping a postive prospective look on life?

Life has impacted me negativity with the in and out of the hospital ,daily medication , bullying, laugher nat comments can drive you insane Having sickle cell is not easy I fight for my life every single day and not knowing what to expect. I have managed to keep a positive prospective on life because of God and my supportive family they’ve taught me to be strong, resilient and to always have faith in God. I have learned to be strong for myself and for the people around me. To be grateful for the life I still have , to surround myself with people that love me. I am contant with who I am. I thankful for having a lovely father above, who despite allowing me to go through this , gives me strength to endure every bit of it I am thankful for my family and some friends who have always been there with me through all it . I am blessed no matter what I am going through in this life I have been picked personally to live the life I am living through my bad days and through my good days I am still here.

4.What Inspired you to become a Sickle Cell Warrior Advocate?

I started writing about sickle cell because of my lovely parents who helped me to open a page they inspired me to advocate for the sickle cell warriors so that the next generation will be better educated and more prepared…my parents said they are going to do their best to make sure my voice is head in this fight and to let them know that they are not alone in this fight .I want my voice to help spread awareness , educate individuals and improve healthcare outcomes sickle cell is part of me me but it does not define who I am.

5.What message do you have for young Sickle Cell Warriors who are afraid to speak out and address issues affecting Sickle Cell warriors?

To my fellow young sickle cell warriors , sickle cell is not a death sentence be passionate about what they love follow there dreams despite all the challenges that they may face because life is not always as we would want it to be there are ups and downs but stay strong , focused and tenacious about achieving your dreams yes the road is not easy and it won’t be easy and it will never be easy but above all else we forge ahead and keep pushing and bnever let your circumstances define you. I believe there is nothing we cannot do if we set our minds to it. Last but not the least above all put God first.