Read A
Sickle Story
Collecting the Sickle Stories of different people’s experiences with sickle cell is one of the many ways we strive to build an international support network and give those individuals and families a voice.
SUBMIT YOUR STORY!
If you are an individual with sickle cell or you are related/closely associated with someone who has sickle cell, we want to hear from you! Please click the button below and fill out the form to submit your sickle story!
Submit Your Story
Would you like to be featured on our website?
NotJustYou is always collecting stories from individuals and family members who have been affected by sickle cell. So if you or someone you know has a story and a voice that should be heard, please feel free to submit your journey or share this page. We also understand that being completely public about one’s sickle cell can be quite difficult, so you can also choose to keep your stories anonymous. Ultimately, we want to create a space where individuals affected by sickle cell can come and see that they are not alone.
Need help formulating a story?
Essentially, we want to know a short summary of your life experience with sickle cell. Here are some questions to guide you through:
(You do not have to answer them all)
How has sickle cell affected you?
How have you been managing your health/sickle cell?
Have you had a bone marrow transplant? What was your experience like?
What are some of the ups and downs of your sickle cell journey?
How has sickle cell affected your relationships? Family, friends, romantic relationships?
How did sickle cell affect your experience with school/education?
What has it been like parenting/raising a child with sickle cell?
How did/does your sickle cell affect family planning/raising children?
How has sickle cell affected your mental health?
Have there been any useful/helpful services, communities or organizations for sickle cell around you throughout your journey with sickle cell?
Read our sickle stories.
-
Valissa, 32
My journey with motherhood and sickle cell has been the most challenging, yet beautiful experience.
-
Ufuoma, 24
I am Ufuoma Muwhen, a girl who was diagnosed with sickle cell disease at age 2 and battled it for 16 years. Over those 16 years my family and I went through several traumatic experiences. Even though I was the one with sickle cell and I was the one who was going through the excruciating pain, it was like the rest of my family felt it too.
-
Emmanuel, 34
My name is Emmanuel Boakye. I was diagnosed with Sickle Cell Anemia at the age of 3 months. My parents, young Ghanaian immigrants seeking a better life, had traveled to Canada, a country renowned for its top-notch healthcare system. I've lived in and out of hospitals, repeatedly overcoming my Sickle Cell battles.
-
Adedamola, 27
I am a 27-year-old male living with sickle cell disease. My entire world changed from the moment I was diagnosed in my first few weeks of life. Growing up, everything revolved around my diagnosis and I had to learn how to navigate countless challenges including constant hospitalizations and doctor visits.
-
Revée, 29
Hi friends, my name is Revee Agyepong. I am your typical 29 year old girl…besides the fact that on November 09 2017, I had an allogeneic stem cell transplant.
-
Precious, 23
My name is Precious, and I am 23 years old. My sickle cell journey has been quite contrasting from most stories, in terms of diagnosis. I wasn’t fully diagnosed with sickle cell anemia until I was in my first year of university.
-
Osasere, 24
I am a 24-year-old warrior who is 8 months post-transplant and on the verge of becoming sickle cell-free. Growing up I did not know that people with sickle cell disease were referred to as warriors until I was 22 years old.
-
Christen, 24
Where do I even begin...I was diagnosed with sickle cell at birth, born prematurely 3 months early. Along with sickle cell disease I have cerebral palsy. My parents were told I wouldn’t make it through the night and if I did I’d be a vegetable, but God said otherwise…
-
Anonymous, 19
I’m a 19 year old guy who lives in Ireland with sickle cell disease. I got it from my parents who had the trait. My sickle cell journey started when I was 2 years old. I had a cold so my mom took me to a doctor, where they tested my blood and found out that I had sickle disease…
-
Tiana, 24
Hello, my name is Tiana Palmer and I am an AML (Acute Myeloid Leukemia) survivor. Months before I went to get a BMT I felt very discouraged about it, very nervous and I went to YouTube to see if anyone documented their experience…
-
Lovejoy, 25
I came into the awareness of my health condition when I was seven years old. My doctor had to have a sit down session with me to educate me about it because I was always fighting with my parents, I was stubborn and quick to question their instructions and decisions.
-
Afoma, 19
Hi guys! My name is Afoma, I’m 19 and I’m a Sickle Cell Warrior. So basically, living with sickle cell disease has not been easy; from the endless stays in the hospital, to the excruciating crisis (bone pains), to the numerous blood transfusions.
-
Michelle, 24
I was diagnosed with sickle cell anaemia when I was 1. As a child I don’t remember being in pain a lot except a few occasions when I was really cold.
-
Anonymous, 39
Our daughter, now 3 yrs old, was diagnosed with Sickle Cell S.C. when she was approximately 10 months old. She was not diagnosed because of a pain crisis, but rather because her left hand was swollen, which I have since learned is called Dactylitis – a condition, that occurs in infants 2 years and younger, when the blood has pooled up around a joint.
-
Monica, 47
Monica Rockwell was diagnosed with Sickle Cell Beta Thalassaemia and Congestive Heart Failure at the tender age of 38. As an adult patient, she was looking for resources that were very limited and a short supply.