For Immediate Release From Sickle Cell 101!
Sickle Cell Disease and Mental Health by: Halimat Olaniyan
Jemela Williams discusses how sickle cell affects her more than just physically. She discusses the impact of mental health as someone living with sickle cell disease, and how she manages its complications.
To those living with sickle cell disease, we know that our pain is very real, despite whether the rest of the world can see or believe it. But what about other invisible types of burdens that come with chronic pain or going through life in a world that can be so cruel and unfair? The ones that do not get as much attention as the physical pain, like the fatigue or emotional distress sickle cell disease can cause.
Like any sickle cell warrior, Jemela Williams has dealt with a lot of pain in her life, both physically and mentally. Jemela – Sickle Cell MidWest board member, National Pain Advocacy Center Community Leadership Council board member, and Social Media Strategist for Diverse Health Hub – knows all too well about the other invisible burdens of chronic pain. She just celebrated her 42nd birthday on April 4th – talk about sickle cell strong! Yet, she still believes she has a lot of learning and growing to do. She even describes herself as shy, which you would never believe after looking at her incredible social media and sickle cell advocacy involvement.
Mental Health
Living with sickle cell disease is already enough, but Jemela is also diagnosed with depression. She shares openly about having hard days when she’s crying, too sad to take her medicine, or even getting out of bed.
“I think a lot of us in the sickle cell community are grieving… I have lost people… [and] I am still processing my grief.”
She shares how important it is to take care of your health, see your doctor, and talk to someone when you need help. Her biggest advice to sickle cell warriors and anyone struggling with their mental health is to talk to someone.
“I think we all need someone to talk to… for me, that’s my sickle cell community.”
Self-care
When sharing coping mechanisms, Jemela emphasizes the two most important things for her own well-being – her sickle cell community and prioritizing sleep. She leans heavily on her sickle cell network by using resources such as Cayenne Health and her Be the Spark network. She also feels lucky knowing she can turn to her longtime best friend.
When all else fails, sleep is always there – to rest and recover from the fatigue that Jemela and many other sickle cell warriors struggle with. “I need lots of sleep… it’s part of my self-care routine.” I think a lot of sickle cell warriors can relate to needing a little more sleep than most. It gives our body time to replete its blood supply and our mind time to lessen the worries and stress.
If you are someone you know who struggles with mental health, know that you’re not alone. Asking for help and letting someone know you’re not okay are two very brave and powerful first steps.
Learn more HERE!:
https://www.sc101.org/jemelawilliams/ ********
Sunday James Shares His Experience with Receiving Blood Donations by: Nnenna Kumenda
Sunday James talks about how important donating blood is for the sickle cell community and how blood transfusions have been saving his life since he was two years old.
To those living with sickle cell disease we know how hard it is to find blood donors, especially with those who develop antibodies. Sunday highlights the significance of blood donation through sharing a story of his recent experience with a blood transfusion which he believes saved his life. Back in 2022, he describes being in the hospital for five days without pain relief after trying multiple ways to manage it. His doctor gave him an exchange transfusion, which removes a patient’s sickled red blood cells and transfuses a donor’s health red blood cells. In only two days after the transfusion, he was back to being pain-free and out of the hospital.
January is National Blood Donor Month. James encourages others to donate blood to save someone’s life, especially those living with chronic illnesses like his. To donate visit your local hospital and/or blood donation center and save someone’s life.
Learn more HERE!:
https://www.sc101.org/sunday-james-shares-... ********
Educational Initiatives
Through its educational initiatives, Sickle Cell 101 annually selects community-prioritized topics to delve to encourage self-advocacy and global community engagement.
Curative 101: Curative Therapies for Sickle Cell Disease Educational Initiative
This educational initiative by Sickle Cell 101 aims to provide foundational information on curative options for sickle cell disease (SCD). By exploring the fundamentals of current and emerging curative therapies, we hope to empower our community to engage in informed decision-making.
Our goal is to encourage discovery and open dialogue around these potentially transformative treatments. We believe that knowledge is power – equipping patients, families and providers with a strong understanding of the science and medicine behind these options will lead to better outcomes and experiences.
While the path to a universal cure is still unfolding, our mission is to delve deep into this rapidly evolving landscape. We aim to deliver balanced, evidence-based education that enables our community to evaluate curative therapies with a discerning and empowered lens. Join us as we shed light on the promise of tomorrow’s treatments, while navigating the realities of SCD care today.
Defining “Cure”: We aim to level-set perceptions, expectations and facts surrounding curative therapies. What does it really mean to be “cured” of sickle cell disease.
Curative Approaches: We will provide comprehensive information on the different types of current and emerging curative options, including key differences between them.
Accessibility of Curative Options: We will address critical issues around access, including patient qualifications, geographic availability and more.
Curative Approaches: We will provide comprehensive information on the different types of current and emerging curative options, including key differences between them.
Accessibility of Curative Options: We will address critical issues around access, including patient qualifications, geographic availability and more.
Our goal is to empower patients, families and providers to have informed discussions on whether these transformative therapies are right for their unique needs and circumstances. We thank the community for guiding our programming and helping us deliver the most meaningful education possible.
Learn more HERE!:
https://www.sc101.org/programs/educational... ********
Sickle Cell Trait
You’re in the right spot to learn more about sickle cell trait.
Sickle cell trait (SCT) is a condition in which a person inherits only one sickle cell gene. People with sickle cell trait are called carriers meaning they can pass on the sickle cell gene to their children. Additionally this means sickle cell trait cannot develop into sickle cell disease (SCD).
Typically those with sickle cell trait do not experience the health complications as seen in sickle cell disease. However, in rare cases people with sickle cell trait may experience some health complications and there is evolving research uncovering the link between sickle cell trait and its potential complications due to certain triggers.
More sickle cell trait resources below.
https://www.sc101.org/sicklecelltrait/ VISIT: sc101.org
Posted By: agnes levine
Thursday, February 29th 2024 at 12:24PM
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