Aging With Sickle Cell...For The Past Year My Sickle Cell Has Gotten Worst, Even With Being On Endari For It. So I Was Wondering, Does Sickle Cell Get Worst As You Get...Reactions0reactionsComments4 replies
Things never to say to a warrior...What would you add to the list, or what has been said to you that was unkind/untrue?...Reactions0reactionsComments1 repliesCoping
Individuals with HBSC...I would like to know does anyone have tingling/numbness in their feet and hands? Does anyone hurt in their joints on a constant bases?...Reactions0reactionsComments6 repliesSymptoms
Connect With Other Sickle Cell Warriors!...Living with sickle cell can sometimes feel like a lonely journey, but remember, you are not alone!...Reactions0reactionsComments10 replies
A member named Marnita...I will be 63 in Dec I have 4 children all healthy 9 grandchildren and 1 great grandson on the way. The heat bothers me and I live Reactions0reactionsComments1 replies
Does a warm climate make you feel better or worse?...I usually come as often as I can as I always feel good when I do, but this is the longest time I've spent here and also the best...Reactions0reactionsComments11 replies
Reaching out to the hinterlands ...Living in a country with law and order, available healthcare services are rendered to you with little or no cost.But we here in Nigeria are suffering 100...Reactions0reactionsComments8 repliesAwarenessAssistive DevicesDepression
I’m here to meet and do more in creating awareness...I hope to create more awareness in this regard in attempt to reducing to barest minimum the incidence of SCD....Reactions0reactionsComments3 repliesAwarenessCoping
Will you take our In America survey to share the truth about life with sickle cell?...By taking this anonymous survey, you can help everyone better understand the real impact of sickle cell: http://bit.ly/3J7FcDW...Reactions0reactionsComments1 repliesAwarenessResearch & Clinical Trials
Will you take our In America survey and help others understand the true impact of sickle cell disease?...The In America survey is now closed....Reactions0reactionsComments0 repliesAwareness
How do you deal with the Jaundice that sometimes comes with have SSC?...At times they can become really yellow. I am very insecure about them and avoid looking people in the eyes so that they don’t notice....Reactions0reactionsComments3 repliesAssistive DevicesDiet & NutritionTips & Advice
Patient concierge ...I’m looking for ideas on what services can be provided that would help you while in and out of the hospital....Reactions0reactionsComments5 repliesAwarenessCaregivingDiet & Nutrition
How much is?...Thank you so much for your time and have an amazing day....Reactions0reactionsComments1 repliesInsurance & Disability
How it feels when I don't have anybody to share my feelings with...i can't be my true self around people, so I have to put on a mask and pretend to be someone am not, nobody want to listen to my shit...Reactions0reactionsComments1 replies
Hope ...I’m 25 years of age,living in Nigeria..been diagnosed ever since I was born And I spent my early years in hospital..I’ve had 1 blood transfusion so far...Reactions0reactionsComments2 repliesCoping
FeaturedNew FDA treatment for SCD...The US FDA approved the first cell-based gene therapies for the treatment of sickle cell disease (SCD) in patients 12 years and older this month....Reactions0reactionsComments9 repliesTreatment
FeaturedFavorite books, podcasts, or social media accounts for sickle cell information...Share in the comments below!...Reactions0reactionsComments6 repliesAwareness
FeaturedWhat sickle cell opportunities are you most interested in?...know what matters most to you and what opportunities you are interested in learning more about....Reactions0reactionsComments2 repliesAwareness
How 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?...Reactions0reactionsComments1 replies