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Previously, I’d never publicly shared my experiences with delayed puberty and how deeply it affected me. Looking back, I realize that it was an important part of my journey with sickle cell disease (SCD). I hope my story will help young warriors and caregivers understand this often-overlooked complication and remind them that they are not […] The post Delayed puberty and other sickle cell…
Common pain relievers, such as nonsteroidal anti-inflammatory drugs (NSAIDs) or acetaminophen, combined with standard opioid care, may provide meaningful relief for acute pain in people with sickle cell disease (SCD), according to a review study. Cognitive behavioral therapy, a type of talk therapy, also showed signs of efficacy against chronic SCD pain, while other treatments, […] The post Review…
Recently, I’ve been struggling with a departure from my normal routine. I’ve written about how exercise and good nutrition have helped me manage my sickle cell disease, but I’ve been traveling a lot and have found myself thrown off balance in ways I didn’t anticipate. At first, I blamed it on the time difference. I […] The post Learning to keep moving forward, even when I lack motivation appeared…
So, your child has been diagnosed with sickle cell disease. What now? Grieve, but don’t let it paralyze you. The greatest risk isn’t the grief itself, but how it can freeze parents in fear, denial, or helplessness. Because raising a child with sickle cell, however unfair, means you need to step up as a parent who […] The post Growing up with sickle cell disease: What my parents did right appeared…
Note: Oluwatosin Adesoye is a practicing physician living with sickle cell disease and is a columnist for Sickle Cell Disease News. Caring for someone with sickle cell disease is an act of love that often happens quietly in emergency rooms and hospital wards, and during sleepless nights at home. Caregivers become advocates, medication reminders, chauffeurs, […] The post Coping with sickle cell…
Note: Mary Shaniqua lives with sickle cell disease and is a columnist for Sickle Cell Disease News. Growing up, I had excellent pediatric hematology care. It was consistent, I had a trusted specialist nurse, frequent appointments and testing, and so on. Everything changed when I transitioned to the adult clinic. Before I could even adjust, […] The post Moving from pediatric to adult sickle cell…
Note: Dunstan Nicol-Wilson lives with sickle cell disease and is a columnist for Sickle Cell Disease News. A hematology appointment may last only 20 or 30 minutes, but the decisions made during that time can shape the months that follow. As a caregiver, your preparation and observations can help ensure those decisions reflect everyday life. […] The post How caregivers can advocate for their loved…
When I received a stem cell transplant in 2019, I was given something I had dreamed about for more than three decades: the chance to live without sickle cell disease. My brother was my donor, and because he was a perfect match, the transplant process was a success. For the first time in my life, […] The post Guest Voice: How we care for the people who survive sickle cell disease appeared first on…
“We lost a gentle soul yesterday. Rest warrior Daryl Rosborough.” Reading that sentence as I checked my Facebook first thing in the morning felt like a ton of bricks crashing down on me. Daryl was more than a friend; he was like an older brother to me. Sadly, he passed away on July 13, just […] The post The cost of connecting with others in the sickle cell community appeared first on Sickle Cell…
Can people who don’t have sickle cell disease (SCD) advocate for the community? Absolutely. However, I think there is an important distinction that deserves attention. Usually, most advocates are patients, caregivers, healthcare professionals, or family members of people living with the disease. However, I’ve recently seen an influx of people joining online support groups and […] The post Beware…
