Temperamental Temperatures: Weather and Sickle Cell...The weather in the Midwest is just about as unpredictable as sickle cell pain is. It’s March, so it makes sense that...reactionscomments
How I Practice Self-Care...My name is Grace, I am a wife and mother, and I work as a full-time content creator. I also live with...reactions1comment
Recognizing Past Challenges and Prioritizing My Mental Health...Content Warning: This article discusses abuse and suicidal thoughts. If you or a loved one are experiencing suicidal thoughts, please text or...reactions5comments
Elle Cole...Elle Cole empowers moms and advocates for children with sickle cell disease. She is a mom of twin daughters, one of whom...
Music Therapy...Have you used music (either playing or listening) to help cope with pain and other symptoms? If so, what have you found...reactions6repliesCopingTips & Advice
Take the Health and Media Habits Survey!...The Media Habits Survey is now closed. Thank you for your interest! Managing a chronic condition is not easy and can be...reactionscomments
Mind Mapping & Staying Organized for Hospital Visits...Have you ever caught yourself lying awake in the middle of the night, going back to months ago to find out what...reactionscomments
Working on My Fitness...The best my health has ever been was in D.C., before starting medical school. I mean, there are lots of reasons why...reactions3comments
Finding Credible Health Information...There is a lot of health information available on the internet these days. From personal blogs and online magazines to government websites...reactionscomments
Coping With Mental Health: Trauma-Informed Care...Traumatic experiences can be life-changing, and it is well understood that such experiences can have long-term effects. In addition to mental health...reactionscomments
Making Time for Healthcare Appointments...With sickle cell, time is always of the essence. Life is unpredictable but even more so when you have an unpredictable chronic...reactions2comments
Questioning Yourself?...A lot of things go through my mind. Especially now that I’m stuck on crutches due to vascular necrosis. I ask myself...reactions4comments
Women's History Month...What are some unique challenges women with sickle cell face?...reactions6repliesCopingAwareness
Rebuilding My Confidence With AVN...I believe everyone living with sickle cell disorder has an idea of what avascular necrosis is. Even if you have not experienced...reactions3comments
How Can You Care For Me, If You Don't Care About Me?...To anyone who may witness me in a pain crisis, please do not judge me in my worst moment. Living with a...reactions6comments
Five Things I Wish I Knew Before the Transplant...I've said it about a million times, I'm happy I participated in a clinical trial and got a second chance at living...reactions1comment
Prioritizing Self-Care After Transplant...Undergoing a transplant is a difficult process for children and adults because each stage - from conditioning to stem cell infusion, and...reactions1comment
Change Makers Bundle Giveaway Terms and Conditions...Official Rules, Terms and Conditions for the Change Makers Bundle Giveaway NO PURCHASE NECESSARY TO ENTER OR WIN. A PURCHASE DOES NOT...reactionscomments
2 Questions about this graph: (please view graph)...For context this graph is about 2 patients who received a CTX001 infusion. (CRISPR-Cas9 treatment) One month after infusion HbA skyrockets. Why...reactions1replyResearch & Clinical TrialsSide EffectsSymptoms
Ask the Advocates: Rare Disease Day...Rare Disease Day® is celebrated on the last day of February every year. This year, it falls on February 28, 2022. This...reactionscomments
