Recovering from Heart Break...I have a broken heart. It’s crazy because I genuinely thought I was done with those. I thought I had met and was finally with the man I was going...reactions4comments
Most memorable healthcare experience...Hospitals and clinic visits are a big part of living with sickle cell. What is a memorable moment (good or bad) that has stuck with you?...reactions4repliesHealthcare Team
A Day in the Life of a Sickle Cell Advocate...As a sickle cell advocate, you are sometimes confronted with very difficult situations. For a few months, I also do volunteer work for a hospital that focuses exclusively on adults...reactions2comments
Changing Healthcare Providers...It seems like that is all I know, CHANGE. Over a period of a few months, I have had to change several of my healthcare specialists. For me, it takes...reactionscomments
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 it would be a little cold and I...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 sickle cell disease. One of the many ways...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 call National Suicide Prevention Lifeline at 1-800-273-TALK 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 is living with sickle cell disease and type...
Music Therapy...Have you used music (either playing or listening) to help cope with pain and other symptoms? If so, what have you found most helpful? What is your favorite type of...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 physically and mentally exhausting. What types of media...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 went wrong? Or preparing a session with the...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 this makes sense. I had a steady, though...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 and beyond, advice about your health is available...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 challenges, past traumatic experiences can lead to other...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 illness. You never know how much time you...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 "why?" I know the importance of self-sufficiency, hope...reactions4comments
Women's History Month...What are some unique challenges women with sickle cell face?...reactions6repliesAwarenessCoping
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 it, you must have seen someone or heard...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 chronic illness, especially one as painful as sickle...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 my life without the limitations of sickle cell...reactions1comment
