A How-to Guide for Self-advocacyAfter the initial shock of a chronic disease diagnosis, questions arise. What does this mean? How do I manage the symptoms? Can...reactionscomments
A Dad's Journey of HopeI can't accept this! As an experience expert, you grow over the years as a person, as an individual and above all...reactionscomments
What to Know When Dating Someone With Sickle CellThe first thing you must check before even considering asking a person with sickle cell out on a date is your genotype...reactions4comments
Performance ActivismI started my work in patient advocacy in 2017 but along the way, there have been moments of pause that make me...reactionscomments
A Bootless Man“Now I believe we ought to do all we can and seek to lift ourselves by our own bootstraps, but it’s a...reactionscomments
Finding My Pace: My Journey with Sickle Cell and ExerciseI like to believe that having sickle cell doesn’t at all limit my potential. If I really want to do something, then...reactions13comments
Paying Attention To Body LanguageWhen you hear the phrase "body language," you immediately think of non-verbal cues that we use to communicate: crossed arms, head movements...reactions3comments
Sickle Cell Books You NeedLast week, I was putting my nephew to bed and he asked me to tell him a story. At first, I wanted...reactions1comment
Racial Disparities in HealthcareThe term "racial disparities" refers to the ways that different racial groups are treated differently or have different outcomes. Racial disparities in...reactionscomments
Emergency Challenges and GuidanceI've written many times about challenges in the emergency department (ED) with my little princess. Unpleasant situations usually cause feelings of misunderstanding...reactionscomments
Finding a Support Person for Doctor AppointmentsPeople with chronic health conditions like sickle cell disease often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and...reactionscomments
Adventures Abroad With Sickle CellGet ready with me for my next adventure, a tour around Europe! I have been dreaming of returning to Europe ever since...reactions1comment
10 Questions to Ask Your Doctor When You Are Newly DiagnosedIt is often hard to know what to ask, or even where to begin when you have questions about a new diagnosis...reactionscomments
Sickle Cell Disease in the Emergency RoomIn recent years I have always wondered how we as a Sickle Cell community can make a sustainable contribution to the things...reactionscomments
Live Your Best LifeI have been living with sickle cell disease for 59 years. I have been able to accomplish many things. I am married...reactions2comments
Lessons from My Hip Replacement JourneyLiving with sickle cell comes with many complications. At 17, I was diagnosed with AVN and by 23 I was begging for...reactionscomments
Sickle Cell and MenstruationSickle cell disorder (SCD) causes problems and difficulties in anyone’s life. For women, SCD can also cause certain unique problems. A common...reactions5comments
Essential Questions for Sickle Cell CaregiversAs a sickle cell caregiver, managing the condition can be overwhelming and challenging. I’m sure you may be aware of what sickle...reactionscomments
Honored Sickle Cell JourneyI have experienced a lot of difficulties for my daughter with her school. After years of fighting against the "school system" I...reactions2comments
A Life Worth Living: How a Shorter Life Expectancy Affected MeEditor’s note: As of September 2024, Oxbryta® (voxelotor) has been voluntarily withdrawn from the market by the manufacturer due to safety concerns...reactions3comments
