Live Your Best Life...I have been living with sickle cell disease for 59 years. I have been able to accomplish many things. I am married for almost 35 years and gave birth to...Reactions0reactionsComments2 comments
Running on Empty...I think it is time to focus and acknowledge that I, like other chronically ill people and people with sickle cell, struggle with this sense of normalcy. Since attending primary...Reactions0reactionsComments0 comments
Lessons from My Hip Replacement Journey...Living with sickle cell comes with many complications. At 17, I was diagnosed with AVN and by 23 I was begging for a hip replacement as I was unable to...Reactions0reactionsComments0 comments
My Story...Hello, I was diagnosed at 18 months. My mother said I started to walk. One day she put shoes on my feet. I cried and wouldn’t walk. She took me...Reactions0reactionsComments1 replies
Some tips for managing Priapism at home...Wake up everyday with priapism. Home treatment suggestions thanks....Reactions0reactionsComments1 repliesTreatment
Essential Questions for Sickle Cell Caregivers...As a sickle cell caregiver, managing the condition can be overwhelming and challenging. I’m sure you may be aware of what sickle cell disease is, but I will define it...Reactions0reactionsComments0 comments
Living with Chronic Pain...Living with chronic pain is a complex and often misunderstood experience. Not only does it bring physical discomfort, but it also impacts various aspects of a person's life. One significant...Reactions0reactionsComments0 comments
Please help educate me...Hello, I am learning about ss, to try to help someone. I just read about cells going sickle when oxygen is lacking. I realise its normal for some blood to...Reactions0reactionsComments1 replies
Sponsored: The National Institutes of Health Initiative Advancing Research on Chronic Pain...By National Institutes of Health At least 100,000 people in the United States live with sickle cell disease, a genetic condition that causes red blood cells to take on a...
Honored Sickle Cell Journey...I have experienced a lot of difficulties for my daughter with her school. After years of fighting against the "school system" I decided to enroll her in virtual school. This...Reactions0reactionsComments2 comments
ADA Recommendations Examples & Navigating ADA request ...Hello All, Just looking for suggestions and positive experiences to help my partner navigate work place discrimination and requesting ADA accommodations that would help avoid being penalized for missed time...Reactions0reactionsComments1 replies
Sickle Cell CONSTANTLY Getting Disrespected ...As sickle cell warriors are you constantly getting disrespected whenever you go to the hospital or the doctor or if you get weekly treatment? Your pain not getting taking seriously...Reactions0reactionsComments7 repliesHealthcare TeamInsurance & DisabilityTreatment
A member named Marnita...I was diagnosed with Sickle Cell at birth and was told I wouldn’t live passed 2 years old and if I did I wouldn’t have children. I will be 63...Reactions0reactionsComments3 replies
Life with Sickle Cell in a Warmer Paradise: My Journey to Wellness...Living with sickle cell in a warmer climate has been both a challenge and a blessing for me. As someone who has always dreamed of basking in the sun and...Reactions0reactionsComments0 comments
Emergency ...Dear soldiers this priapism thing is killing me inside. Is there any help here for me?...Reactions0reactionsComments6 replies
Dating, Love, Support, and SICKLE CELL...I'm in love with a woman who has sickle cells, dating her comes with different challenges, she has constant knee pain that limits us only to certain activities. She is...Reactions0reactionsComments7 replies
7 Tips to Prepare Sickle Cell Warriors for Vacation...As a caregiver, I was encouraged and shocked to meet warriors who live limitless lives and have traveled the world. Meeting them inspired me to make sure that I give...Reactions0reactionsComments3 comments
Sickle Cell Awareness Day: How and Why We Raise Awareness...For this World Sickle Cell Day, we asked our Health Leaders, "How and why do you raise awareness for sickle cell disease (SCD)?" In response, they shared their personal experiences...Reactions0reactionsComments0 comments
I’m a Sickle Cell Survivor...Hello, My name is Lisa. I was diagnosed at Cleveland Clinic, OH. I was sixteen months old. My mother said that I had started to walk until one morning she...Reactions0reactionsComments2 replies
