FeaturedActive 8 days agoHow has race affected your patient journey?In your opinion, how has bias affected your journey as a patient? How do you think your journey would be different if you were a different race? Share your thoughts...Reactions 0 reactions Comments1 replies
FeaturedWill you take our In America survey to share the truth about life with sickle cell? There are a lot of myths and misconceptions about sickle cell disease. To better understand the patient experience and realities of living with sickle cell disease, we are fielding our...Reactions 0 reactions Comments1 repliesAwarenessResearch & Clinical Trials
Active todayPain crisis at night time Hey warriors. I’m Ezekiel, a 21 year old Nigerian living with SCD and I’ve always wondered if anyone else who’s got SCD suffers from midnight crisis or is it just...Reactions 0 reactions Comments8 replies
Active 2 days agoDoes exercise triggers pain crises? My Son has SCT, never had any issues until he started working out. He got interested in intensive speed running and suddenly he started complaining about pain. Is this normal...Reactions 0 reactions Comments0 replies
Active 3 days agoPatient concierge I’m in the process of developing a non profit concierge service for sickle cell patients who get hospitalized. I’m looking for ideas on what services can be provided that would...Reactions 0 reactions Comments5 repliesAwarenessCaregivingDiet & Nutrition
Active 3 days agoUnacceptanceAs a sickle cell warrior, Do you find yourself constantly battling other peoples perspective of you? Are the moments you feel unwanted and not understood?? Because I do. And it...Reactions 0 reactions Comments6 repliesCaregiving
Active 8 days agoHow Do You Advocate for Yourself in the ER?We all know that going to the ER isn't fun, especially when doctors don't or won't listen. What are ways that you have found to advocate for yourself in the...Reactions 0 reactions Comments3 repliesTips & Advice
Has anyone used Kratom while managing sickle cell.Let me preface this by saying it is legal in my state. I have begun to use it to help my body go through opioid withdrawals after being discharged from...Reactions 0 reactions Comments1 repliesCopingDiet & NutritionTips & Advice
Student nurseHello Everyone, I hope you are all well? I’m currently a student nurse, I have a presentation due which Centers around life long medical conditions. I decided after having my...Reactions 0 reactions Comments2 replies
A lesson learnedBefore I got married I ran a genotype test,and the result came out that I as AA and my partner AS ,NOT knowing the lab attendant never carried out the...Reactions 0 reactions Comments1 replies
sicke cell anaemiamy son has sickle cell and i have roamed in search of penicillin v suspension but to no avail i feel like giving up dont know what to do...Reactions 0 reactions Comments1 replies
