The Untold Stories
of Sickle Cell Disease

Joel from Ghana

Joel’s story

Age:
13
City:
Accra
Country:
Ghana
“I take him and pick him up from school every day
—walking hand in hand”.

WHO AM I?

My name is Princess and my son Joel has sickle cell disease. We live in Ghana. I raised Joel alone alongside his 2 brothers and sister because their father left 12 years ago when Joel was born, and he never came back. Joel was diagnosed with sickle cell disease when he was 4 years old. He had several strokes that were the result of severe sickle cell disease crises. This is our story.

OUR SICKLE CELL STORY

When Joel was 4 years old, he was suffering from swollen fingers, so I took him to the hospital. They said it was dactylitis, which was concerning to his doctor because of what it might possibly mean. He was kept in hospital for some time. It was at this point that Joel was diagnosed with sickle cell disease. I had to take him back and forth to the hospital every month.

Joel with cat

JOEL’S STROKES

One day, when Joel was 7 years old, he suffered a stroke because of sickle cell disease. This first stroke affected his left side, but he was still able to walk and talk. A year later, when Joel was 8 years old, he suffered his second stroke. This second stroke took away his ability to move his left side—leaving him partially paralysed—and it took away his ability to talk. When Joel wants and tries to speak, he makes sounds. He smiles and makes a noise resembling “Mama”. Joel communicates with people through signs and by writing notes. Thankfully, he is still able to hear well.

Joel at school

JOEL’S EDUCATION

Because of the strokes that Joel has suffered, he was confined to a room for 4 years and missed out on years of his education. Fortunately, he is still able to attend school, but not without help. I take him to school every day and then I pick him up. Joel struggles at times with walking on the uneven ground and sometimes needs a hand for stability, so we walk hand in hand to and from school. I do worry about Joel and what will happen to him if I can’t look after him, if I can’t take him to school.

Joel walking with mother

OUR STRUGGLE

It’s great that Joel can still have an education despite his disabilities, but it is very hard work taking care of him—from walking him to school, feeding, and clothing him. It’s really not easy sometimes. Caring for Joel has had a massive impact on my life as I spend all of my time caring for him at home. And because of his strokes, I lost my own job and income, which has left us struggling financially. Joel and I live day-to-day doing the best we can with the issues we face at the hands of sickle cell disease. Never knowing when the next complication will happen and never knowing when or if Joel will suffer another stroke is difficult.

end
Nana from Ghana

Nana’s story

Age:
25
City:
Accra
Country:
Ghana
“Sickle cell disease in Ghana is not something
people can afford to keep quiet about”.

WHO AM I?

My name is Nana and I live in Accra, Ghana—a country with, what I believe to be, one of the highest number of people living with sickle cell disease anywhere in the world. The more we talk about sickle cell disease and share our stories, the more we will be heard and understood.

MY SICKLE CELL STORY

I have sickle cell disease and need to spend long periods of time in bed, recuperating and resting, which limits my chances of earning money and living my life. It’s like one complication, like pain, leads to a ripple effect of other complications. The stigma attached to sickle cell disease is the reason I lost my job as a bottled water technician in a factory. One day, I fell sick, and when I came back to work I had lost my job. My bosses didn’t want to risk working with someone who would require a lot of sick time away from the job during a pain crisis. Without this job I am struggling for survival.

Nana posing

MY ANSWER TO THE STIGMA

Many people hide their diagnosis and live in fear that they will be treated differently or never get work. I feel that people suffering with sickle cell disease need to start talking about it freely and without prejudice, instead of hiding it. People act as if it’s shameful to be affected, and we are considered a liability. Hiding the disease only makes the stigma surrounding it worse. If people were brave enough to stand up and speak about their suffering, then perhaps the disease would be better understood and perhaps employers would see that not every sickle cell patient suffers in the same way and the disease may not necessarily restrict them from doing their jobs successfully.

Nana looking to the water

MY MESSAGE TO THE WORLD

We should share coping mechanisms and talk about how it feels during those dark times, because that way we can bring hope and comfort to others during times of need. I believe that living with sickle cell disease is not a death sentence. Nothing should limit you, whether you are a person living with sickle cell disease or not. Always remember to stay positive. There’ll be hope for a normal life. If you have access to great health care, you can work, and when you work, you can get some income to take care of yourself and your family. There’s hope. There’s hope for everybody.

end
Yolande from France

Yolande’s story

Age:
35
City:
Paris
Country:
France
“The worst part of sickle cell disease is that
your life is interrupted very brutally”.

WHO AM I?

My name is Yolande, and I was born in Paris, France. My parents are originally from Benin in West Africa. I have sickle cell disease, which I think of as a river. Sometimes the river gets rough and you have to overcome turbulence and face stormy times.

MY SICKLE CELL STORY

The oldest of my three sisters also has sickle cell disease, while my other sisters do not carry the trait. Due to my family's history with sickle cell disease, the medical team was able to diagnose me with sickle cell disease during my mother's pregnancy. When we were young, my family moved to Benin, but then had to return to France because my sister’s condition had deteriorated. When we moved back to Benin for the second time, I fell ill, and we had to return to France once again to seek care. I was prevented from going to the carnival, parties, and school trips. The disease always burst out when fun moments were planned. That is when I started looking at it as an entity. This thing, sickle cell disease. It’s like a demon, a monster. When I was 13, my mother tried to move the family back to Benin for a third time. Despite the precautions we took, I got a serious bone infection, which forced us to move back to France.

Yolande smiling

MY STUDIES AND JOB SITUATION

During my first year of university, I was hospitalised and could not sit for my exams. Instead of retaking the year, I pushed myself to work hard to take and pass the exams. I used anger and sheer determination to motivate myself to go further. Now, I have 3 masters degrees and speak 4 languages, but I’m still unemployed. It’s humiliating, because you fight to lead a normal life, but find yourself in such a situation. Sometimes being unemployed feels like a failure and sometimes I lose hope. I was once working in the Netherlands in my dream job which required travelling several times a month, including flying. I lost my job after a painful, month-long pain crisis that led to acute chest syndrome which occurred while I was travelling to Martinique. A nearby facility took care of me for 15 days and I could not fly back immediately afterwards because I was too weak. The stress of the flight could be fatal or trigger another crisis. I have to take special care with my condition because the stress of travelling can exacerbate my sickle cell disease.

Yolande on a bench

MY SUPPORT SYSTEM

People with sickle cell disease have to work harder in their jobs, to prove themselves. We’re always questioning ourselves. What did we do wrong? Why did this happen? It’s really bad for your self-esteem. I used to be very confident, but since having the pain crisis, I struggled to find my confidence again. I was lucky to find huge support from my family, friends, and others in the sickle cell community. I am now the President of the French Federation of Sickle Cell and Thalassemia patients' organisations. The other patients in the Federation are helping to increase my confidence. I feel like sickle cell has made me a stronger person, and I am really proud of everything I have achieved despite my disease.

Yolande smiling with hands in pockets

MY MESSAGE TO THE WORLD

I want to tell patients and their families that there will be peaceful times. I want them to know that there is still a reason to have hope, to keep fighting, and to live and enjoy life as much as they can. I want to say to the world and to the decision makers: Be more supportive of the patients and their families. Be more tolerant because you never know what struggles somebody has to face in his or her life.

end
Elodie from France

Elodie’s story

Age:
26
City:
Paris
Country:
France
“Nobody should feel shame for living with this disease”.

WHO AM I?

My name is Elodie, and I’m a 26-year-old receptionist from Paris, France. Day to day, I suffer from sickle cell disease, but I don’t let that stop me—I’m a sickle cell warrior.

MY SICKLE CELL STORY

When I was younger, I spent more time in the hospital than I do today. I was always in hospital. Sometimes I was in twice a month. It affected everything. My school. My friends. My hobbies. My family. I had biliary problems, I had pancreatitis, there were pain crises, and many other symptoms like terrible shortness of breath. I had operations, and I thought that was it for me. I thought it was over. The multiple surgeries, the biggest taking place in 2011, left me with scars that I still bear.

Elodie with foot on tire

MY APPROACH TO FITNESS

These days I’m much healthier. I no longer get out of breath. I have a lot more energy and feel great. A few years ago, I went to a fitness class led by Chancel, a personal trainer who coincidentally lost his brother at an early age to the complications of sickle cell disease, and we worked together, so I could get stronger. I was determined to get stronger, both mentally and physically. I hit puberty later in life than all of my school friends, so I was a lot smaller and weaker than most, and that became the driving force for my keen interest in sports and keeping fit. I swing a heavy ball, flip heavy tractor tires, and do agility drills with ease. I could see my body changing and feel myself getting stronger. And now, with Chancel’s support, I even help run his class.

Elodie smiling

MY SOCIAL LIFE

During the 4 long months in 2011, when I stayed in hospital for my surgery, I decided to document my disease, hospital stay, and recovery on my social media accounts. Social media connects us all like a big family, and it allows us to share stories, discuss experiences, meet new people, and see what other people with sickle cell disease can do. I share videos and photos of myself working out to prove that you can still lead a healthy life with sickle cell disease and inspire other sickle cell sufferers to push forward. I enjoy putting myself out there and inspiring people to do more. I try to show that suffering with sickle cell disease doesn’t mean you can’t achieve your dream.

Elodie rolling tire

MY MESSAGE TO THE WORLD

Now, years later, I have come to understand that there may be struggles, but in life, I’ve learned not to give up. I believe that even if we fall down, we have to get back up and keep moving. Continue to fight, don’t ever give up, and it will work out. But you have to keep on fighting and keep your hopes up. I want to have an impact. If I can do it, you can too. Just keep smiling.

end
Demba from France

Demba’s story

Age:
32
City:
Paris
Country:
France
“Stay strong and keep fighting until you can
stand tall with hope and a smile”.

WHO AM I?

My name is Demba and I was born in France. I live and work in Paris as an assistant at the Grande Epicerie de Paris, which I really enjoy. It’s a beautiful building and a great place to work—it gives me a purpose. I am 32 years old and suffer with sickle cell disease, but I am not letting it defeat me.

MY SICKLE CELL STORY

I was diagnosed with sickle cell disease at 6 months old. I suffer a lot of sickle cell crises and spend a lot of time in hospital being treated for the pain. I have undergone many major surgeries because of my disease. I’ve had my gallbladder operated on. My spleen was removed when I was only 4 years old. In 2007, I had 2 major operations on my heart.The only way to describe my excruciating pain is to say that it feels like a muscle cramp but multiplied by 10 to 100, or even more times. This will give you a good idea of the intensity of the pain a sickle cell patient has to endure and overcome. It’s indescribable pain unlike any you can ever imagine.

Demba smiling with hands in pockets

MY FAMILY

I come from a very large family of 12 brothers and sisters. Two of my siblings and 2 of my stepsiblings suffer from sickle cell disease. My little brother and I both suffer from sickle cell crises. It can be stressful for our parents to have so many children suffering crises at the same time and being in the hospital together. I say to myself that everything happens for a reason. My strong faith and belief in God, along with the love and care of my family and friends, keeps me motivated.

Demba smiling on a bench

MY MISSION

Despite my own physical and emotional struggles, I try to do my job to my full potential and help my family take care of my brothers when they are sick. I also like to visit sick children with sickle cell disease who are going through their own crises in hospital. I like to serve as their mentor and friend, sharing my own words of wisdom. When visiting them, I can tell exactly what the children are feeling, and I can see my own pain in their eyes. I listen and understand exactly what they are experiencing and how it affects them emotionally. We understand each other. I tell them that when they fall, they have to get up and keep fighting. Once you eventually get back up, it breeds feelings of hope, which push you to fight even harder toward living, surviving, and combatting the disease. It makes you more and more determined to be greater than your disease. Just because they are suffering today doesn’t mean there won’t be better days full of hope, dreams, and the prospect of living a happy, successful life in the future.

Demba relaxing on a bench

MY MESSAGE TO THE WORLD

It is important to let patients and their parents know that they are not alone in this fight. They should join together and, by doing so, form one great family. No one should ever be and will never be alone. I believe that together we can do great things and we must not leave anyone behind. I believe that the sickle cell community is like a big family that can really help each other.

end
Laëtitia from France

Laëtitia’s story

Age:
28
City:
Paris
Country:
France
“We are capable of anything at all.
Anything at all”.

WHO AM I?

My name is Laëtitia and I’m 28 years old. I live in Paris but was born in Martinique. I am an entrepreneur. I suffer with sickle cell disease, but I have been able to overcome it by pushing forward and believing in myself.

MY SICKLE CELL STORY

When I was 10 years old, I started experiencing the severe pain of sickle cell disease. My mother sold everything we owned so our family could move from Martinique to France for my health care. When I was 12, I experienced avascular necrosis, a serious bone-related complication from sickle cell disease. I had to have a prosthesis surgically implanted in my right hip. As a result, I could no longer walk. It was really hard because at a time when I just wanted to go to the movies with my friends and get out, I couldn’t do it. At school everyone was playing sports or running during playtime, but I couldn’t do it. I felt like I was being left behind because I wasn’t able to participate in other school activities, like internships, either. I felt awful, low, and worthless—that I wasn’t worth anything.

Laëtitia smiling in front of computer

MY STRUGGLE

My mother told me that I needed to be able to walk again and, little by little, I did. Even when I fell down again and again, I would pick myself back up. I would have to support myself by holding onto tables and chairs, and even holding onto my brother and sister for support. After a year of intense work, I began to walk, but I still endured terrible pain in my hips. I was in hospital a lot. I met a lot of nurses who helped me to overcome what I was going through. It was because of them that I decided to become a nurse, and my mother supported me. Unfortunately, because of the pain in my hips and repeated crises, I had to give up my career in health care. I go to the hospital about every 2 to 3 months. The cold always provokes a pain crisis for me. It’s the same for stress, sports, and travelling. I can’t travel easily on a plane, and if I don’t eat well or if I get too tired, I’ll get a pain crisis.

Laëtitia smiling on railing

MY ENTREPRENEURSHIP

I’ve had to adapt and start again. Now I’m an entrepreneur and have launched an app that connects people from around the world who are suffering with sickle cell disease. After 2 years, the online community I created has 2600 users in 35 countries, and it’s still growing.

Laëtitia with hands folded in front of building

MY MESSAGE TO THE WORLD

I want everyone to know that sickle cell disease is not only a disease of black people but also white people. Anyone can have sickle cell disease—it’s like a lottery, because it is a genetic disease. I believe that people who have sickle cell disease should really start to believe in themselves. I know first-hand how it feels to want to give up hope. You’ve got to keep on pushing forward because we are capable of anything if we put our minds to it.

end
June from United Kingdom

June’s story

Age:
36
City:
London
Country:
United Kingdom
“I fight hard to do the little things every day
that other people take for granted”.

WHO AM I?

My name is June. I’m 36 years old, work in NHS commissioning, and I live in London. I was born in South London. However, I grew up in Nigeria when my parents moved from the UK to Nigeria. I moved back to the UK as a young adult and have lived in London since then. I have sickle cell disease, but it hasn’t stopped me from reaching my “Mount Everest”.

MY SICKLE CELL STORY

Doctors once told me that I might not live to see my 18th birthday. I’ve proved them wrong, but I’ve dealt with unbearable pain for 36 years. Imagine someone hammering in the middle of your chest. Constantly. Without stopping. It’s brutal. I also fight severe sickle cell-related complications like retinopathy which affects my eyes, acute chest syndromes that have been damaging to my lungs, and avascular necrosis which will soon require a hip replacement. I often experience fatigue and have been hospitalised many times without warning. I missed a lot of school and had to catch up with schoolwork from my hospital bed or through "school at home".

Spending so much of my life in hospital has been mentally, emotionally, and psychologically exhausting. It can be difficult to carry out normal day-to-day activities, including sports and school activities. My career, relationships, living situation, and travel opportunities are also impacted. I worry about not being able to reach my full potential. However, I celebrate a number of achievements in my life which have positively impacted my life and given me hope. I have a loving family and partner who support me a lot, I was able to earn 3 degrees, build a great career in the NHS, I have travelled 41 countries, published a book, and I mentor children and young people living with sickle cell in London. I am also honoured to say that I was awarded the Floella Benjamin Life Achievement Award in 2017 by the Sickle Cell Society for an inspirational adult living with sickle cell in the UK.

June down and away from the camera

MY EXPERIENCE IN NIGERIA

Living in Nigeria was difficult due to the lack of understanding of the disease. There was some stigma within certain Nigerian cultures or from individuals who may “write off” a baby born with sickle cell because they believed they would die early. People were often ashamed to admit to having sickle cell because of the discrimination and stigma associated with it. A lot of Nigerian children specifically in rural areas may not get tested for sickle cell disease and may not even know they have it which results in death at a relatively young age. It also doesn’t help that health care isn’t free in Nigeria, so poorer people cannot afford access to health care resulting in them suffering immensely. I was lucky to have access to care.

June looks to camera

MY CLIMB TO THE TOP

I’ve always wanted to achieve something greater than the pain of my disease. In October 2017, I visited Sri Lanka on holiday. In Sigiriya, there’s a famous rock which stands 180 metres. Despite knowing the consequences and the difficulty, I was determined to climb the rock. With the support and encouragement of my partner, I did it! It’s just a hill for ordinary people, but for me, it was a mountain. To me, it’s Mount Everest.

June smiling for camera

MY MESSAGE TO THE WORLD

I want the world to understand the depth of the condition, provide more support for people living with this condition—whether it’s policy makers, the government, research, health and social care, families, education, occupational sectors, communities, or individuals.

end
Emmanuel from United Kingdom

Emmanuel’s story

Age:
41
City:
Croydon
Country:
United Kingdom
“I know that I am susceptible to pain crises,
but I try to stay healthy and positive”.

WHO AM I?

My name is Emmanuel and I am 41 years old. I grew up in the United Kingdom and work as a personal trainer in Croydon. I have sickle cell disease and it has affected me both physically and mentally. I try to find the strength to keep persevering and remain positive about my future in the hopes that I will inspire other sickle cell patients to do the same.

MY SICKLE CELL STORY

Sickle cell disease has affected me physically, with severe pain in my joints, including my shoulders, legs, and chest. I am waiting for 2 operations on my shoulder. I have also lost the sight in my left eye due to sickle cell disease. At 11 years old, I had a near death experience when my heart stopped, and I had a cardiac arrest. I was rushed to the ICU ward and I remember looking down at myself, almost like a bird’s-eye view—an out of body experience, since I was unconscious during this period. I feel like I survived for a reason—that I have a purpose on this planet, and I need to use my experiences to inspire others. My last pain crisis happened around 18 months ago and involved a painful episode in my right shoulder.

Emmanuel smiling with crossed arms

MY STRUGGLE

I have experienced sickle cell–related stigma first-hand. I have experienced difficulty in my relationships because my partner felt too burdened by my disease. The psychological pain of a previous partner of mine telling me that she couldn’t be with me, that my condition was too stressful, and that I’m disabled, so therefore not a good life choice, was hurtful. Furthermore, because of the stigma, I have been refused treatment when I was in unbearable pain. These doctors sometimes wouldn’t give me medicine for my pain, thinking that I didn’t physically look like a sickle cell patient because I was “too fit”. Some hospitals have even labelled me as drug seeker.

Emmanuel looking on from camera with a smile

MY ATHLETIC LIFE

It is very important to me to stay as fit as I can be. As a kid I was told I was weak and that I should not do sports or stressful activities or go outside in the cold. However, I wanted to be like everyone else, if not better, so I would play rugby, football, or athletics. I turned to bodybuilding at 18 to develop self-confidence. I keep myself positive throughout the difficult times by inspiring other patients. I don't know why I have sickle cell and why I have to go through these things, but if I can use it to inspire or educate others, then perhaps it is a gift, rather than a curse. I have always seen sickle cell as more of a blessing than a burden. I mentor, coach, and give the children advice and direction while doing physical activities like boxing, a game of tag, and ball games. It is the best thing ever and the highlight of my week. It makes me feel young and alive. It's a true blessing that has been bestowed upon me. I want to guide them so they can learn and not make the same mistakes I made while growing up in London.

Emmanuel holding a soccer ball Emmanuel mentoring young children

MY MESSAGE TO THE WORLD

I want sickle cell disease to be more accepted so that patients will not be persecuted and treated as if they are criminals or drug seekers. I want fellow sickle cell patients to know that they are not suffering alone and that I feel their pain. I want them to know that the pain they currently feel is of flesh, and that quite possibly this challenge they are struggling with is a test of spirit. Your spirit has been brave, bold, patient, and resilient, and you have persevered and have been determined to get this far. It will all make sense in the end. You are being built for something special and all will be revealed in God's time.

end
Ahmed from Bahrain

Ahmed’s story

Age:
28
City:
Manama
Country:
Bahrain
“When I get the pain, I find solace and comfort creating something”.

WHO AM I?

My name is Ahmed. I am 28 years old, and I live in Manama, Bahrain. I have sickle cell disease. I have a sister who carries the trait and an older brother who does not have sickle cell disease. Even though I live with this disease, I find ways to create beautiful art which I use to ground myself and take control of my life.

MY SICKLE CELL STORY

I had my first pain crisis when I was 5 years old. Sometimes with sickle cell disease my pain can stay in one area of the body. Every time I put weight on my legs, I feel severe pain and need crutches to help me walk. The pain is horrible. It feels like I’m being repeatedly hit by a hammer over and over again. I was working as a civil engineer and after several years in my career, I had to give it up. Living with sickle cell disease made it difficult for me to work. The pain in my hands, legs, and knees meant that I could not sit at a desk for long periods of time. I believe that sickle cell disease is as much a mental and social disease as it is a physical disease. It is not just about physical pain; it's mental torture. It excludes you socially. It hurts you physically but tortures you mentally.

Ahmed showing his drawing

MY ART AND MEDITATION

I now work as a freelance artist. I have lived with the pain my entire life and feel that the only thing that has kept me alive is my artwork. I discovered that drawing is as good for me as any therapy. I turn my pain into beautiful pieces of art instead of complaining, giving up, or doing nothing. It’s very therapeutic and something positive to distract me. By focusing on creating something, it takes me into a world away from the pain. I am used to the pain and to spending a lot of time confined to my bed. I use that time when I am stuck in bed to meditate. It helps to clear my mind of the negativity associated with sickle cell disease and creates the mindspace for me to come up with my creative projects. It’s like taking clay and turning it into a masterpiece. It gives me peace.

Ahmed drawing

MY BATTLE WITH DEPRESSION

I have struggled with depression. I can smile now, but there have been very dark, low points in my life when I found it difficult to endure. When the pain becomes unbearable, I am not able to go out and socialise with my friends. That is very isolating. It’s hard to see the bright side of life. Art definitely helps because it lifts my depression.

Ahmed smiling for camera

MY MESSAGE TO THE WORLD

I hope that everybody who struggles with sickle cell disease pain can find his or her talent. Practise it and own it, so you never get depressed. It helps you cope with the pain. My pain and living with sickle cell disease can be unpredictable and stormy, but I feel like creating art is something that gives me a sense of control and calm. It makes me feel in control. It’s like I am the creator of this beautiful land which is the canvas, and I am the giver of life.

end
Manahil from Bahrain

Manahil’s story

Age:
36
City:
A’ali, Manama
Country:
Bahrain
“Sickle cell disease patients
can achieve anything”.

WHO AM I?

My name is Manahil, and I am 36 years old. I was born and raised in Bahrain’s capital city, Manama, when I was diagnosed with sickle cell disease. Because of my disease, I now have limited use of my right arm, but I won’t let that stop me. With hard work, self-belief, commitment, dedication, and a positive mindset I can achieve great things. I see nothing but love, ambition, and great hope in my future.

MY SICKLE CELL STORY

When I was 1 month old, the doctor told my mother that I was sickly and that she should expect me to die. My childhood was the hardest time of my life. I don’t feel as if I had a childhood. I grew up in the hospital and everything was forbidden to protect me: “Don't walk, don't play, don't eat sweets, don't do this, don't do that”. I suffer from bone pain in my shoulder and retinal damage in my eyes. My pain from sickle cell disease is unrelenting. Pain and pain and more pain. It never ends. The worst pain crisis I had occurred in 2002 when I was preparing for my sister’s wedding party. Suddenly, I felt a pain in my left hand and after a half hour, my elbow was swelling. It didn’t stop. It took over my body. After 3 hours, my family called an ambulance because I was weak and struggling to breathe. I was so scared. I was in intensive care for 2 weeks. After 1 month, I finally left the hospital. I am very lucky to be alive.

Manahil showing a plant

MY SISTER

My sister, Azhar, also had sickle cell disease, but she tragically passed away after suffering a severe pain crisis. I was devastated because we were very close. I keep the jewellery she gave me in my wardrobe, and flowers in my house since her name means flowers, in memory of her and in dedication to her.

Manahil smiling in hard hat

MY DREAM JOB AND HOME

My teachers told me I would not be able to achieve any of the things I wanted to do, because I have sickle cell disease and I should just stay at home. I decided not to listen to them because you have to follow your dreams. My dream was to become an engineer and build a dream home for myself and my family—and that is exactly what I did! I was able to persevere and succeed. It took 7 years of hard work, focus, dedication, and financial hardship to be able to get my university degree. I often heard my father and mother say that they both wished they could build their own house. Their dream grew bigger, but the real obstacle was the money. When I graduated from university, I promised myself that I would help them realise their dream. I had to drive 2 and a 1/2 hours each way, in the middle of the desert across to Saudi Arabia, but I was able to save up for, design, and build the home of my parents’ dreams. I even made most of the contents in the house by hand as well. At school, you have no choice but to listen to your teachers. You feel what they say is important, but I was able to prove my teacher wrong and showed him exactly what I was able to achieve. I’m not stopping here. I plan to continue studying, furthering my career, and plan to build my family a separate home of their own.

Manahil showing her painting

MY MESSAGE TO THE WORLD

I have a message to share with other younger patients. Always remember to enjoy your life. Nothing can stop your dreams. You have the colour brush, so go and paint colour in your life. Manahil did it, so can you! Never forget that you’re a star.

end
Zakareya from Bahrain

Zakareya’s story

Age:
45
City:
Manama
Country:
Bahrain
“You have two options, either to be a survivor or be a warrior.
I chose to be a warrior”.

WHO AM I?

My name is Zakareya, and I live with sickle cell disease. I am not only a sickle cell disease patient, but also the chairman of the Bahrain Society for Sickle Cell Anaemia Patient Care. Sickle cell made me lose a little, but I learned a lot. I earned wisdom. I earned my humanity. Sickle cell anaemia took the simple things but gave me a lot more.

MY SICKLE CELL STORY

I have had bilateral hip operations and replacements, bilateral shoulder joint operations, 7 bones in my spine have been rebuilt, and my gall bladder has been removed. I visit the hospital for a blood exchange every 8 weeks. With sickle cell disease, I have come close to death 11 times. During my last visit to the ICU, I truly believed it was going to be my last. In preparation for my passing, I said goodbye to my family, colleagues, and friends. But miraculously, I found my way back, baffling my doctors. I saw the white light in my room but somehow, I found my way back to life. When I was young, my family was told by doctors that I would die before my teenage years as a result of sickle cell disease. Then later, as an adult, I was told that I was unlikely to live to 42 years old. I am now 45 and keeping the promise I made to my family—that I will live to the age of 75, not with sadness and pain but with love and happiness.

Zakareya looking to camera

MY STRUGGLE

Despite my determination, I have struggled with losing job opportunities and promotions. I was not provided the appropriate training to do my work because I had sickle cell disease. Society can take away a sickle cell sufferer’s function and ability to work. There is a stigma surrounding sickle cell disease that is being practised in different forms for different people. In my experience, people with sickle cell face the most stigma in hospitals. Sometimes when I went to the hospital, I would have to convince doctors of my pain. Sometimes I was sent away because they suspected I was a drug seeker, even though I truly needed help. Some have given themselves the right to judge our pain. I have lost many of my colleagues because of this stigma.

Zakareya smiling in front of tree of life

MY TREE OF LIFE

In Bahrain there is an attraction called “The Tree of Life” that has a very special meaning for me. It’s over 400 years old and stands alone in the desert, growing strong and surviving without water despite the heat. It has adapted to life and has struggled to survive despite the weather conditions. I feel like my experience with sickle cell disease is similar to the tree of life. I learned from the tree of life to establish my roots in life in search of immortality and to never fall down—to be a warrior. This is an important lesson for all those who suffer from sickle cell disease. The tree of life and I have both somehow found the determination to persevere.

Zakareya standing in front of lights

MY MESSAGE TO THE WORLD

In my professional role as chairman of the Bahrain Society for Sickle Cell Anaemia Patient Care, I have come to realise that everyone is responsible for his or her own health. By working hard to educate this community, share support, and spread love and positivity, together we can build stronger foundations for this community to survive. I hope that we will be the last generation born in Bahrain with sickle cell anaemia. I hope Bahrain will be a nation without genetic diseases. We must work to end the world's suffering from this disease.

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Teonna from USA

Teonna’s story

Age:
27
City:
Baltimore
Country:
USA
“If another warrior reaches out to me for help, that’s just what I do”.

WHO AM I?

My name is Teonna and I am 27 years old. I have sickle cell disease and avascular necrosis in all of my joints which has led to 4 hip replacements. Even though I have been through all of the complications of living with sickle cell disease, I never let that stop me from helping others in the sickle cell community and making lasting change.

MY SICKLE CELL STORY

Growing up with sickle cell disease was difficult. I missed school for months at a time and even missed my prom because of a sickle cell crisis. My stance on dating is that if the person doesn’t know what sickle cell disease is on the first date, I’m afraid that's it, he’s gone. It’s not going to work out. I had my first sickle cell disease complication when I was 2 years old. It’s one of my earliest childhood memories. The thought of going outside when it’s cold makes me nervous because it can trigger a sickle cell pain crisis. I’m lucky to have so much family support. When I was younger, every winter, my grandmother was afraid to let me play outside in the snow with my brother, but she brought fresh snow into the house in a bucket so I could build snowmen. My grandmother wanted to make sure that I could experience all the things a child without sickle cell enjoys so I wouldn’t miss out on my childhood.

Teonna sitting on porch

MY ADVOCACY AS A SICKLE CELL AMBASSADOR

I am a natural leader and an active advocate in the sickle cell community. I receive messages from people living with sickle cell disease all over the world, some as far away as Africa, asking for advice, help, and support. I’m proud of the fact that I have become trusted in this community. Even when I am struggling emotionally or suffering with my own disease, I try to stay upbeat and refuse to turn my back on other sickle cell warriors in need. We have to stick together.

Teonna smiling on couch

MY PRESIDENTIAL EXPERIENCE

The highlight of my life was getting to spend time with the first African American First Lady of the United States, Michelle Obama. I was lucky enough to be invited to the White House on 3 separate occasions. Michelle Obama even wrote me a letter. It said that she and the President shared in my hope and optimism for our nation’s future and that our strength as a country depends upon engaged citizens like me working together. She encouraged me to find new ways to serve my community in the months and years ahead.

Teonna showing photo

MY MESSAGE TO THE WORLD

I believe there are still so many unmet needs not only within our community in America, but more so across the world. It’s our job to advocate and make sure our stories are heard. We can make a difference. We recently got a huge legal victory! Fighting to change the law and winning was so motivating. I hope my advocacy continues to inspire others to channel hard work and dedication into their own sickle cell activism.

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Tartania from USA

Tartania’s story

Age:
39
City:
New York
Country:
USA
“Sickle cell disease is what spurs me to do more”.

WHO AM I?

My name is Tartania and I am a practising physician specialising in pain management. Sickle cell disease is a big part of my life. I live with sickle cell and so does my brother.

MY SICKLE CELL STORY

I was a very sick child and missed a lot of school because I was in the hospital. Sickle cell had a huge impact on my life. It affected how I grew up, who I socialised with, and the educational opportunities I had. Family members would bring me my homework to the hospital. I worked hard to keep ahead of my studies so I wouldn’t fall behind when I was in the hospital during a pain crisis.

Tartania smiling in front of her home

MY RELATIONSHIP WITH MY BROTHER

I’m not the only one in my family who has a sickle cell story—my brother Christopher suffered a stroke when he was 4 years old because of his sickle cell disease, which left him disabled and unable to walk or talk. Having lost my mother to cancer, my father, Patrick, is Christopher’s sole caregiver. Christopher's mind is still sharp. His personality is still evident when he interacts with us. He’s working hard to get better, and that’s encouraging! We’re both warriors.

Tartania smiling with family

MY MEDICAL JOURNEY

Witnessing my brother’s complications inspired me to become a physician in palliative and pain medicine. I knew it was going to be a long, hard road but I wouldn’t give up. The disease was my motivation to succeed. I wanted to become the doctor who has sickle cell disease and can help treat those with the disease. Between working and dealing with my own sickle cell symptoms, I have very little free time. I’m always on call for patients because I take my work seriously and they value my opinion. I have long and exhausting work shifts in the hospital, but it’s worth it.

Tartania opening door

MY MESSAGE TO THE WORLD

Sickle cell disease doesn’t have to hold you back. Sickle cell disease spurs me to do more, to go forward, to push myself to be better, and to show people that I can do it too. Having sickle cell disease taught me how to fight and adapt in order to succeed. I realised that through hard work, dedication, and determination which I learned from my father, all of my hopes and dreams were in reach. I turn any negativity into helping patients with the same love I have for myself, my brother, and father. I enjoy and embrace my life since I can’t change it. I can’t change the fact that I have sickle cell disease in the same way I can’t change my skin tone. I love it. I love me. I love my disease. It frustrates me. But I love it, because it’s still me.

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Yago from Brazil

Yago’s story

Age:
25
City:
São Paolo
Country:
Brazil
“I know the limitations with my disease, but it doesn’t stop me”.

WHO AM I?

My name is Yago. I was born in Brazil and I am an accomplished model. I live with sickle cell disease. My story is not only about fighting the disease but also about fighting to get a diagnosis.

MY SICKLE CELL STORY

I am a very fit and healthy guy with light skin and green eyes. When I first got sick, years ago, doctors simply would not believe that I had sickle cell disease. Even after a test had confirmed it, there were some who could not accept or did not believe the diagnosis. It was unthinkable. The doctors refused to believe the positive test results. My mother believed it and kept advocating for me.

Yago about to workout

MY FAMILY AND SICKLE CELL DISEASE

Although they didn’t realise it, both my parents carried the sickle cell trait. They passed it on to me and my younger brother Yran. Yran’s sickle cell disease is more severe than mine and his pain is greater. This year has been intense for my family, because Yran has been unwell. We are lucky we have parents who have always been supportive. When we were growing up, they made sure we knew that even though we had sickle cell disease, it shouldn’t stop us from setting goals and working to achieve them.

Yago on couch with brother

MY MOTTO

With my family’s encouragement, I have grown up with a positive can-do attitude. Gradually, I have been able to overcome my difficult younger years and have begun to fight my disease head on. I won’t let my disease stop me. In fact, it’s just the opposite—it keeps me motivated, it gives me the ability to get up when I am knocked down, and it teaches me to embrace every new day.

Yago is a model and has sickle cell disease

MY MESSAGE TO THE WORLD

I am grateful to God for my career as a model, for a great life, for being able to exercise freely, and for my positive mindset. I hope others fight for their diagnosis and continue to battle the stigma and discrimination surrounding sickle cell disease like I have. I want others with sickle cell disease to stay strong and keep moving.

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Yran from Brazil

Yran’s story

Age:
16
City:
São Paolo
Country:
Brazil
“I want us to be more open and honest about sickle cell disease”.

WHO AM I?

My name is Yran, and I am 16 years old. I was born and raised in Brazil. I have sickle cell disease and so does my older brother Yago. Despite suffering from sickle cell disease, I go to school to get my education. For me, school is normal. I want us, as a community, to be more open and honest about sickle cell disease.

MY SICKLE CELL STORY

The majority of the pain that I suffer is in the lower part of my spine. It can be very painful. Compared to my brother’s disease, my pain is more severe and requires more time in the hospital. My sickle cell disease is more debilitating and restricting. We don’t really know why that is the case. We just know that when I need to go to hospital, the pain is so much worse than his. At the moment it is under control.

Yran smiling with family

MY RELATIONSHIP WITH MY BROTHER

I don’t know anyone else who suffers with sickle cell disease apart from Yago. I’m happy that I have someone like my brother to talk to when I am struggling with the pain of the disease. It brings us closer together. When I am in pain, I can talk about it to him and he knows how it feels. I am impressed by the way my brother is upfront about his disease while working as a model and how he still has a career despite his condition. I admire how he keeps fit and healthy by going to the gym and getting regular exercise. It inspires me and gives me hope that I too can fight my disease and win.

Yran on couch with brother

MY VIEWPOINT ON SICKLE CELL

I know there are many people with sickle cell disease out there but a lot of them are probably ashamed or hiding it, which is wrong. Both Yago and I treat our sickle cell disease in a similar way—we don’t hide it and we’re not ashamed of it. We don’t sit around all of the time talking about the disease. We just get on with our lives. We try to be honest and open and want others to try to better understand the disease. My closest friends know that I have it and I don’t mind that people know or find out about it. I don’t think it’s such a big deal that people know. I don’t feel like I should keep it hidden forever. It’s OK that people know. The question is, how they react, what they will think, and what they will say.

Yran smiling with miniature skateboard

MY MESSAGE TO THE WORLD

I truly believe that people should learn about sickle cell disease and people should talk about it. I believe that will change the way the disease is experienced by those who have it and the way that professionals will treat it. It is important to be open and honest about sickle cell disease—that could change the stigma associated with the disease, and it will become something that isn’t so different.

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Caroline from Brazil

Caroline’s story

Age:
24
City:
Campinas
Country:
Brazil
“We exist and deserve to be respected”.

WHO AM I?

My name is Caroline and I was born in Brazil. I work in fashion as a personal stylist. I have sickle cell disease and so does my aunt. My 16-year-old sister does not have sickle cell disease. I’ve had to change my routine, but I am still chasing my dreams and staying positive.

MY SICKLE CELL STORY

My family discovered that I had sickle cell disease when I was only a few months old. My aunt was also diagnosed with sickle cell disease when she was 4 years old and suffers more than me. One of my first memories was of a bad pain crisis. I remember the pain being so bad that I wanted to die—it was unforgiving. No one deserves to feel such pain. I didn’t want to live. My grandmother was distressed to see me in so much pain but assured me that I would get better. She always tried to lift my spirits, teaching me from a young age about the importance of remaining positive. She said to me, “Don’t say that. You’ll be better”. So, after that, I tried to be calm and it helped the pain a lot. I do not usually have pain crises from sickle cell disease, but recently I found out that it has affected my brain. I have headaches because of the lack of oxygen to my brain, which can be fatal.

Caroline in bedroom

MY SUPPORT SYSTEM

Being open about having the disease has helped me created a reliable and compassionate support system. During school, my grandmother would let people know that I suffered with sickle cell disease and what this meant. This made it easier for people to understand what I was going through, so they could support me when I had a pain crisis. Whenever I was in hospital, my friends would bring my homework and books to the hospital so I could study from my bed. I worked very hard to keep up with my studies, so I wouldn’t miss out on much and could stay up to date with the rest of the class. My mother has been the best person in my life. She cried for days when I was diagnosed but, in the end, she neglected all the things she wanted to do for herself so she could make the best possible life for me. She was adamant that she wanted me to be treated the same as any other child and taught me to feel the same way about it. I have in my mind that I am normal but I have a disease. And this disease needs some care, some attention. When I return home, my mother always reminds me that I am a strong person. She always makes me feel better.

Caroline with mother

MY STRUGGLE

I have followed my dreams by working in the fashion world as a stylist, helping people. Now i’m working with graduating students and their families to help them dress for their graduation parties. I really want to continue my studies so I can improve my career. Employment has been challenging in that sometimes I feel frowned upon by others. When I miss work, I always get looks of disapproval. It’s a kind of veiled discrimination. The disease has also affected my daily life. I feel that I can’t do all the things I used to do when I was 18 years old, like staying at school all day long and then having the energy to go to the gym and swimming classes afterwards. I can still do all this, but I have to sleep for days afterwards. I have had to totally change my routine, the days I work, and my perspective on life’s challenges since I feel so very tired. I realise that I am limited and have had to adapt my life, the way I am, what I can do, and live life in a new way.

Caroline smiling at camera

MY MESSAGE TO THE WORLD

Always remember that we deserve respect. Our pain and lives are different than yours. We fight our own bodies every day to be normal and do all of the things that we want. With love and support from family and friends, I have managed to stay positive, and you can too!

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Giving a voice to people whose stories have gone untold

Dr Kumar, a global health physician and photographer, is sharing inspiring images and stories from around the globe to raise awareness for sickle cell disease and help change how the world sees it.

Capturing the inspiring stories of people with sickle cell disease and their caregivers through essays, videos, and photographs from his travels, Dr Kumar is bringing more attention to the disease to help raise awareness of the suffering of people across the globe.

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