Finding a Support Person for Doctor Appointments...People with chronic health conditions like sickle cell disease often face complex treatment plans and multiple doctor visits. Brain fog, fatigue, and problems concentrating are frequent side effects too. That...Reactions0reactionsComments0 comments
Adventures Abroad With Sickle Cell...Get ready with me for my next adventure, a tour around Europe! I have been dreaming of returning to Europe ever since my trip to Spain back in high school!...Reactions0reactionsComments0 comments
Free Tutoring for Kids with Sickle Cell...Hi! I am a 10th grader and would like to offer free tutoring services for kids with Sickle Cell. Last year I was out of school for a significant period...Reactions0reactionsComments0 repliesCopingCaregivingCost
10 Questions to Ask Your Doctor When You Are Newly Diagnosed...It is often hard to know what to ask, or even where to begin when you have questions about a new diagnosis. Many community members on this site talk about...Reactions0reactionsComments0 comments
Loneliness: The Silent Symptom of Sickle Cell...It is not an understatement to say that it is harder to find lasting and meaningful friendships as one progresses into adulthood and the new life that awaits. A quick...Reactions0reactionsComments1 comments
Misinformation on Living with Sickle Cell Trait...I’m 29 years old and the sickle cell community and doctors still have a lack of knowledge of sickle cell disease and the trait. If they fully understand Sickle Cell...Reactions0reactionsComments1 comments
Sickle Cell Disease in the Emergency Room...In recent years I have always wondered how we as a Sickle Cell community can make a sustainable contribution to the things we see again and again. The more I...Reactions0reactionsComments0 comments
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
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
