Mr. Spates believes in living a full life with this disease instead of feeling sorry for himself.  He understands that there will be times in which he’ll feel extremely bad, but he also knows that in a few days he’ll be better again.  During his childhood, he was told that he wouldn’t live past the age of 11.  However, he refused to comply with the doctors’ restrictions and limitations.  In high school, he participated in football and track & field.  Mr. Spates’ family instilled a powerful belief in him at a young age that the disease wouldn’t prevent him from living.   It’s this determination, resilience, and courage that propelles him throughout his life. Related story

Once a month, she undergoes a grueling process called hemapheresis. All of the blood is removed from her body, the platelets and plasma are separated out and returned to her, and then Peterson is given eight to 12 units of packed red blood cells. This helps to mitigate the pain she lives with every day. “I don’t know what it means to be without pain. I have nothing to compare it to,” Peterson tells The Root from her bed at Doctors Community Hospital in Greenbelt, Md. “I have what I call my normal pain, and my pain where I need to be in the hospital. They always ask what your pain scale is from 1 to 10. I function on a normal person’s 7 to 8. It’s like my 2.” Related story

That day in the hospital, my intuition was confirmed: A few minutes after I met the man in the waiting room, a nurse called me into a room to comfort him. My frequent trips to this particular hospital have made me a ‘celebrity patient,’ and at that moment, they needed someone to motivate the young man who I learned also struggles with SCD. As I began to share comforting words, I noticed a few things that disturbed me. This man was alone and almost penniless; I was told he had a serious health issue that was only aggravated by sickle cell. That day, I had entered the hospital with complications from my own diagnosis, but my issues were nothing compared to his. Learning of his struggles reminded me of the phrase, “I cried because I had no shoes, until I saw a person without legs.” Sickle cell is painful and financially draining for anyone, but this man’s story particularly moved me. Related story

AJ had his first sickle cell crisis at about 8 months. We didn’t really know what to expect with a crisis, but the early newborn screening test was helpful because we knew he had sickle cell disease. When he had his first painful sickle cell crisis we would never have known to take him to the hospital. We probably would have just thought he was crying to be crying and put a bottle in his mouth. We knew something had to be wrong with him and we didn’t take it lightly. We took him to the hospital and they said that he was having a crisis in the top of his foot. It was important to have the newborn screening done so that we knew to watch for these things. If we hadn’t had the newborn screening done we wouldn’t have known what was going on with him and sought appropriate care right away. Related story

It would be really unfair for me to compare ones pain with mine but honestly, I don’t think there’s any pain that surpasses that of a Sickle Cell Crisis. I remember when I was a kid, I used to have frequent episodes of pain. I did not know much about sickle cell then but I knew I was different. I was treated differently. I did not understand why I wasn’t allowed to run around like every other kid. Why I wasn’t allowed to play as much. I missed school a lot too. I wasn’t allowed to do strenuous activities like my siblings. I just knew I had sickle cell, but why was I being treated differently! It was just a disease like any other right? Wrong! Related story

I wake up with an active volcano for a chest. When I breathe in, even lightly, I hear wheezing for miles. I don’t want to call the doctor but I call the doctor. Fifteen minutes later a receptionist leaves me a voicemail: If I can get to the surgery within the hour, I’ll be seen. I’m not sure how I make it down the stairs – and into the car and through the 20-minute journey and out of the car and across the courtyard and into the reception and down the corridor to knock on the doctor’s door – now that my limbs are made of lead. I collapse into a chair, sit feebly and at a nonsensical angle. This chair is too hard for patients, I think. Are the chairs always this hard? Related story

Whether we like it or not, sex is important in a relationship. If you are not sexually attracted to the person you are in a relationship with then there is a problem. So we decided to dig into the sexual life of sickle Cell warriors. I had Greg Emuze and Adedayo over on Crux of the Matter last Friday on Happenings Radio and I must thank them for being very open. The show was very enlightening. “Sex is not risky. It is fun.” Says Adedayo while Greg says “Sex is a form of exercise and you must be hydrated.” They were open enough to let us know when they had their first sexual experience, how their sex life is and what they do to prepare themselves and avoid having a crisis during sex or immediately after sex. Related story

My name is Noah Alexander Williams and I am living with sickle cell anemia disease. Sickle cell isn’t really a widely talked-about disease but it’s so real and epic that it should be. Sickle cell anemia disease is a grasping chronic sickness that doesn’t let go. Unfortunately I have it and have had it since I was born. I don’t know life without sickle cell disease and therefore I don’t know life without pain — the daily aches, the crucial crises that come out of nowhere. Sickle cell is never predictable. Of course this disease has impacted my life beyond words. I’ve learned to cope with it. Related story

Nine year old Jacob has sickle cell disease. His mother Sheree Hall doesn’t just understand the findings from the sickle cell patient experience survey, she lives them. As a working mum of two, navigating the healthcare service as a carer of a child with a long term condition, many of the experiences and challenges identified in our recent report are all too familiar. In the below interview Sheree shares her day to day experiences of sickle cell disease, how it impacts family life and what more support and service improvements would mean to her personally. Her story is arresting, enlightening and highlights the importance of capturing and acting on people’s experiences in order to improve care. Related story

Ms. Dobson says that her worst symptom is fatigue, but by managing her overall health, Ms. Dobson has been largely able to avoid the strong painkillers that are so common in sickle cell care. Ever since her treatment at Jamaica Hospital, Ms. Dobson has pursued a career in nursing. She is dedicated to improving the care of all of her patients, but particularly to increasing awareness of sickle cell disease and the best ways to treat its symptoms. Related story