Sickle Cell Disease Stories

Sickle Cell Disease Stories

Sickle Cell Disease Stories

SERI shares patients stories to help every individual living with Sickle Cell Disease, regardless of where they are in the world, to know that they are part of a larger community.  We also want to show how they perceive the health care they receive. 
SERI  wants  to emphasize on patient centered-care.
Our story matters!

Lwimba kasongo – Living with Sickle Cell Anaemia

I am Lwimba kasongo,  been living with sickle cell for over  30 years! I call myself a fighter because i have come this far despite the challenges surrounding the disease . I currently volunteer for UTH and Levy Mwanawasa Hospital, as a way of helping my fellow warriors, because i understand their struggle too well. Through my testimony i encourage others who are walking the same journey! I also carry out alot of awereness programs on tv, radio, as well as at our schools and my facebook page.So glad to be part of the team 🙂

Yemi Moses – Living with Sickle Cell Anaemia

My name is Yemi Moses. My parents had seven children; I was their fourth child, and by the time they had had their seventh child – four of us had been diagnosed with Sickle Cell disease. As you may know, SCD can be a debilitating disease. When my older sister was born with SCD in 1972, the doctors’ knowledge of this disease was much more limited than it is today. So, when my sister was born, the doctors let my parents know she would not live past the age of 18. And my parents had three more of us born with sickle cell after that… I cannot even imagine how their strength and fear were entangled. But strength constantly overcame. As I grew up with sickle cell, I remember having minor episodes. 

Nedine Chisenga – Mother to a child living with Sickle Cell Anaemia

I am Nedine, a lawyer by profession also mother to a strong, amazing and intelligent young girl. Miss M who was born on 2nd May 2015 at Levy Mwanawasa Hospital. She was 4.8 Kgs, everything seemed normal, until when she was 3 months old when she fell ill and her HB was low but the doctors said she had malaria and it could cause such low HB. She recovered and continued to enjoy good health until when she was about 2yrs when one night she experienced shortness of breath and I rushed her to the hospital where the Dr diagnosed her with a chest congestion. They prescribed medicine and she was fine. By this time she had developed into a healthy little girl, running around and bubbly, very talkative and independent.

 

Muchemwa Mutuka – Mother to a child living with Sickle Cell Anaemia

My name is Muchemwa Mutuka, I am a mother of two boys and a travel consultant by profession. My second child, Master D was diagnosed with sickle cell when he was a year and half.  He is now 5 years old and doing his reception class. When he was growing up his eyes used to be yellow. I remember that when he was two weeks old we were admitted with jaundice and I was thinking that maybe it didn’t just clear that’s why his eyes were  yellow. Sickle Cell never crossed my mind.  

One night, he got sick and at the U T Hospital, a doctor requested to have him checked at metropolis laboratory for sickle cell disease. A week later, the results came back positive. I felt like a dark cloud has covered my family and I could not help it but broke down.

Peter Leos

Born: In the 1960s, Melbourne Australia to Greek immigrant parents.
Studied: Monash University (Bachelor of Economics); University of Melbourne (Diploma in Education).

I was diagnosed with Sickle Cell Anaemia in 1963 at the Royal Children’s Hospital when I was 3 years old. My first awareness of SC pain was pain in the joints of my fingers as a 3 year old. This developed into more severe joint pain as I got older and became a teenager (usually in the arms or legs and in later years, in the lower back).

For 50 years the standard treatment was pain relief, blood transfusions and staying hydrated. The symptoms of SC pain and the anaemia were treated in this way but there was no preventative treatment at the time other than avoiding de-hydration, over exertion or infections.

Natasha Kashito

I’m Natasha Kashito age 28, I was diagnosed with SCD at 3 months old, type ss. I have 2 siblings one of them is a warrior too. I was in and out of hospital most of my younger years and I missed out on school a lot, I used to be admitted for 2-4 weeks at a time depending on how severe the crisis was. When I was in grade 7 it was so bad that I used to carry an oxygen tank with me to school. I didn’t know what I had so I let people’s ridicule get to me, the bullying was so intense I tried to commit suicide twice. But when I got to high school it started getting better and the hospital visits reduced, I learnt how to manage myself and take care to avoid having crisis, 1st year at university on my 1st day I told my story to my whole class and so many people walked up to me to tell me of their loved ones who had SCD and they asked for my advice on how I manage it, that was the turning point for me. I knew if I shared my story I could help so many out there like me and last year on world sickle cell I went live on radio and told my story and now I reached a bigger audience .. I decided to be a voice for the voiceless. And I’m grateful I’m alive today to advocate for my fellow warriors

Jean Millet

Soon after my birth in a village in Africa some 62 years ago, I was constantly ill to the point where, they thought I will not survive my early childhood days. At that time, in my little village there was no medical facilities, so it was impossible to know what was wrong with me. I was told that I would cry constantly to the point that my mother didn’t know what to do with me. It came to a point where people suggested that I should be handed to fetishism to finish me off. As I was growing up I spent two third of my school days at home with constant pain episodes. The only remedy I had was my mum robbing my whole joints with pepper and ginger paste, and sat me in the sun. At the age of 23, I migrated to France where I finally discovered that I have sickle cell disease. In 1984 I had and operation in both eyes for retinal vein occlusion, and later continued with laser treatment for years. In 2012, I suffered a stroke that got me hospitalized for a long time. On January 29th 2015, I had a hemicolectomy surgery to remove a third of my large intestine (colon). In total there were 29 lymph nodes harvested, luckily they were all harmless. The question remains how did that happen? Is it because of the short life span of my blood cells? I do not know. But I’m happy to be AROUND! the journey has not been easy…

Sophia Anna

Sophia Anna is an invisible illness advocate, ASCA supporter and health student.  Sophia Anna lives with Sickle Cell Anemia and Avascular Necrosis.  She is the founder of The Sick Sexy, a youtube platform which aims to reduce the stigma around disability and invisible illness.

My first week of high school, I had to learn to use a pair of crutches and a wheelchair.  The doctor told me I wouldn’t walk again.

Today, at 26, I walk without aid and I am a huge advocate for sharing your truth through disability and invisible illness.   I try to keep as fit and healthy as possible, keeping my broken joint as flexible as possible and I undergo monthly blood exchanges to keep my sickle cell count low.   Outside of my condition, I enjoy modeling, writing, studying hard, and breaking down stigma online about invisible illness.

A diagnosis is not the end of your story.  It’s the beginning.

 

Leyla Hamidou

My name is Leyla Hamidou, I am Nigerian and I live in the capital, Niamey.
I’m 35 years old and I live with sickle cell anemia. I am the eldest of three children.
I was diagnosed when I was 2 years old. During my childhood, I did not have many crises.
However, I realized that my health was fragile a little before my 10 years.
When I reached an adolescence age that all the complications started. I had attacks of pain in the joints, attacks of fatigue after long efforts, stress or any emotional shock.
Over the years, I have had several surgeries following complications that caused necrosis in my two hips and one of my shoulders. Painful moments that I could overcome thanks to the relentless support of my loved ones.
I owe my survival to my parents. They fought for me when I didn’t understand him yet. They sacrificed a lot to give me the best care available. They still continue to do so.

Mohammad

Mohamed-Bachir

 

My name is  Mohamed-Bachir.
I am 37 years old and I was born in Niamey, Niger in West Africa. At two months old, I was a chubby baby and was  my parent’s joy because I was their first child. But at 4 months, I became whiny. I did not look well and I was gaining a lot of weight.
At the hospital my mother was told that in reality I was not gaining weight because I was well fed but that I was swelling, and actually puffy because of the pain. They told her I was suffering from  the severe form of Sickle Cell anemia (SS).
I had the pain disease as they call it.

That is  when  the fight to save my life  began for my parents and  especially my maternal grandmother who sacrificed all her life and happiness in order for me to  live.  This disease is little known and poorly managed in my country. People told my grandmother that I was going to die soon. I had a very strict  diet: I was not allowed to eat salt, oil, or sugar…

Sickle Cell Disease Stories

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