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 is this and is this a problem? In...Reactions0reactionsComments1 repliesResearch & 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 day is designed to support those living with...Reactions0reactionsComments0 comments
6 Health Goals For Warriors...Every year we promise ourselves that we will take our health seriously and do better with our health but we never really make that change. Sometimes we give up and...Reactions0reactionsComments3 comments
Living Within My Means as a Warrior...I believe I was born to be rich. I can tell by the size of my dreams and aspirations. I set goals that scare me and keep me awake at...Reactions0reactionsComments6 comments
A Close Encounter With COVID-19...As soon as you turn on the television you are confronted with the rising COVID-19 cases trend. This is not only in America but in many other countries. We are...Reactions0reactionsComments0 comments
A Fireside Chat With Pain...For the last two years, I've suffered in silence because as a transplant recipient, a common misconception is that my life is remarkably blissful. Sickle cell pain is out the...Reactions0reactionsComments5 comments
Fatigue...When I was little, and I would get sick, my mother would hardly ever let me skip school. She’d push me to get up and get ready, saying it would...Reactions0reactionsComments0 comments
Sc disease - Sickle cell...Not sure if anyone knows but I got my blood work done and my testosterone levels are extremely low. I’m thinking of doing testosterone replacement therapy but I don’t know...Reactions0reactionsComments2 repliesDiet & NutritionDiagnosis
5 Important Nutrients...Have you ever wondered why the majority of people living with sickle cell look younger and have a smaller stature than their peers? This can in part be traced to...Reactions0reactionsComments2 comments
The Importance of Improving Your Nutrition...My name is Wunmi and I'm a foodie! Carbs, snacks, and sugary drinks are the way to my heart. I mean the heart wants what it wants and I need...Reactions0reactionsComments7 comments
Unmade Memories...It is always wise to plan activities way ahead of time. This is supposed to help make the outcome be well planned out before the day to avoid stress and...Reactions0reactionsComments4 comments
Legalization of Medical Marijuana: The Impact on Those Living With Chronic Health Conditions...Surveys show a majority of people in the United States are in favor of legalized marijuana for medical or recreational use. As of early 2022, cannabis for medical use, or...Reactions0reactionsComments0 comments
6 Tips for Staying on Top of Treatment...Living with a long-term health condition requires us to stay on top of everything: doctor’s appointments, new symptoms, insurance, and, of course, managing treatment – all while taking care of...Reactions0reactionsComments1 comments
Fearfulness vs. Fearlessness...Sometimes I worry that I am living my life in fear. In fear of triggering a sickle cell attack, of not being able to do something I want because of...Reactions0reactionsComments5 comments
Lena Harvey...Lena Harvey hails from the heartland, having been born in Chicago, IL and raised in Indianapolis, Indiana. In 1989, at the age of four, Lena was formally diagnosed with Sickle...
Supporting Children With Chronic Pain...In my role as a mother and sickle cell advocate, I often talk about acceptance. It starts with accepting the illness, after that, you have to accept all the other...Reactions0reactionsComments2 comments
Identity Crisis - A Stranger In My Own Body...At the end of each year, many people reflect on their personal accomplishments - reviewing wins, losses, successes, and failures - intently taking a closer look at their real life...Reactions0reactionsComments3 comments
Misconceptions on Drug Use and Dependency...Pain is unbearable, even for the strongest warrior and soldiers. The measurements health officials put on pain are totally unnecessary if you ask me. Why? Whether the pain is at...Reactions0reactionsComments4 comments
How to Make 2022 a Better Year With Sickle Cell...'I want this year to be better than last year.' Have you ever told yourself this? Sure you have. As humans, we always want more in life. As someone living...Reactions0reactionsComments3 comments
Sometimes It's Okay to Be Perceived as Defensive...One problem most SCD patients face is verbal abuse. The things people say to us are sometimes too mean and unfair. We mostly can’t do anything about this. It practically...Reactions0reactionsComments10 comments