Performance Activism...I started my work in patient advocacy in 2017 but along the way, there have been moments of pause that make me...reactionscomments
Andres Story...Can someone help me understand why no one is taking my son’s pains and difficulty with gout seriously? His sickle cell trait...reactions1reply
A Mother’s Fight, A Son’s Courage...My son Jaydon was born with sickle cell disease, and our journey has been one of resilience, faith, and advocacy. Sickle cell...reactions1reply
Restless Legs Syndrome in Children with Sickle Cell Disease...Restless legs syndrome (RLS) is a neurological condition that disrupts sleep in children and adults. That is why it is also called...reactions3comments
A Dad's Journey of Hope...I can't accept this! As an experience expert, you grow over the years as a person, as an individual and above all...reactionscomments
A How-to Guide for Self-advocacy...After the initial shock of a chronic disease diagnosis, questions arise. What does this mean? How do I manage the symptoms? Can...reactionscomments
What are the major challenges faced by SCD patients at age 40 and above?...Give causes and remedies to the challenges....reactions1replyAwarenessCopingDiet & Nutrition
What coping methods help with anxiety, fear and loneliness?...Since my last hospital visit I have been anxious, fearful and kinda lonely. I didn't experience anything different during hospitalization but I...reactions1replyCopingFriends & FamilyMental Health
Sickle Cell Books You Need...Last 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 Healthcare...The 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 Guidance...I've written many times about challenges in the emergency department (ED) with my little princess. Unpleasant situations usually cause feelings of misunderstanding...reactionscomments
Where Do I Go From Here?...Being born with sickle cell, I was constantly in and out of the hospital. Once I got older, it calmed down a...reactions1reply
Sickle Cell at Age 50...I was just diagnosed with Mild Sickle Cell Disease at 50. I was always told that I had the sickle cell trait...reactionsreplies
Healing Childhood Trauma...A wise person once told me that my mental, physical and emotional health are connected. I grew up in a culture and...reactions1comment
Finding a Support Person for Doctor Appointments...People 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 Cell...Get ready with me for my next adventure, a tour around Europe! I have been dreaming of returning to Europe ever since...reactions1comment
Free Tutoring for Kids with Sickle Cell...Hi! I am a 10th grader and would like to offer free tutoring services for kids with Sickle Cell. Last year I...reactionsrepliesCopingCaregivingCost
10 Questions to Ask Your Doctor When You Are Newly Diagnosed...It is often hard to know what to ask, or even where to begin when you have questions about a new diagnosis...reactionscomments
Loneliness: The Silent Symptom of Sickle Cell...It is not an understatement to say that it is harder to find lasting and meaningful friendships as one progresses into adulthood...reactions1comment
