Yesterday, I was reminded why it’s so beneficial to talk with other people in the sickle cell community. Producers from the YouTube channel Make It Common asked me to participate in an episode about sickle cell disease. They invited five people with the condition, including fellow Sickle Cell Disease…
Columns
My therapist asked me, “What does it mean to you to be a ‘masculine man,’ and how does having sickle cell disease impact that meaning?” It’s a question I hadn’t fully considered before, but about the same time I came across a podcast titled, “Unlearn Everything,”…
I was unwell for a week in August. It began with deep lethargy. After about two days of that, the vomiting started. Everything made me vomit: brushing my teeth, drinking water, nibbling food. I went into the hospital after about four days because I was sure I was experiencing…
As a child growing up with sickle cell disease, constant trips to the hospital gave me the perception that the doctors and nurses in charge of my care were superhuman, and they always provided me with quality care. It seemed there was no issue they couldn’t fix. I…
I didn’t reveal that I had sickle cell disease when I started my first job here in the U.K. As a new college graduate, and with the odds stacked against me because I had no previous work experience, I didn’t want my health condition to also affect my employment…
The treatment Adakveo (crizanlizumab) has been made available in the U.K. as the first new therapy for sickle cell disease in over two decades. The aim of Adakveo, which will be available to patients 16 and older in England and Wales, is to reduce the number of sickle…
I have a difficult time knowing when I’m not feeling well apart from when I have a severe illness. That sounds ridiculous, right? Because I have a chronic condition, someone might think I would know when I feel sick. But the irony is that a chronic condition can result in…
Because sickle cell disease affects people differently, I’ve never met two people with the disease who have the same story. A quick Google search can introduce someone to the basics of sickle cell, such as its biology and common triggers, but understanding its differences and the ways it…
The pain from a sickle cell crisis is one of the most devastating things I have felt. It is unpredictable and can eat away at you physically, spiritually, and mentally. The normal response to severe pain is to cure it or ease it, which usually involves taking some type…
Every time I share about my son’s sickle cell disease diagnosis with other parents caring for children with the disease, the question I am always asked is, “Does your son take penicillin?” It’s such a common question that I feel I should share the answer with you, too. Before I…
Recent Posts
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis
- Chicago nurses lead charge to speed up SCD emergency care: Study
- Recognizing the warning signs and symptoms of a sickle cell crisis
- US senators seek 5 more years of federal funding for stem cell program
- Adults with SCD face high risk of stroke in their 30s and 40s, study finds
- Sickle cell doctors face higher burnout than other specialists: Study
- Disease burden heavy for SCD patients in US, despite promise of gene therapy
- The conversation we avoid: Telling children they have sickle cell disease
- New study finds distinct molecular signatures in newborns with SCT