In the quiet corners of our society, there are individuals and families bravely facing a daily challenge that often goes unseen; living with Sickle Cell Anemia. This is not only a personal health battle but a profound communal experience. For those affected, community support is not just helpful, it is life-sustaining. As someone living with Sickle Cell Anemia, June 19th, World Sickle Cell Day as observed by the United Nations, is more than just a date. It is a powerful reminder of the daily fight for survival, the need for greater awareness, and the strength of community that has carried me and countless others through our most challenging days.
Sickle Cell disease is a chronic blood disorder that affects the shape and function of red blood cells. These sickled cells block blood flow leading to severe pain episodes (called crises), organ damage, frequent hospital visits and an overall reduced quality of life. It is a condition that affects millions worldwide, particularly people of African, Caribbean, Mediterranean and South Asian descent.
Growing up with sickle cell in Antigua and Barbuda meant frequent absences from school, long hospital stays, employment uncertainty and often feeling misunderstood and my abilities underestimated. Pain episodes can come suddenly and with such intensity that even breathing becomes difficult. The unpredictability of sudden health crises often leaves you feeling like you’re battling an invisible opponent. But what people often don’t see, and what I want to celebrate today, is the unbreakable strength of community that surrounds people like me. It’s that community that transforms suffering into strength.
While I have learned to advocate for myself, to balance rest with responsibility, to listen to my body but not let the disease steal my future, I understand that it takes courage, and it takes community. My community has empowered me to be gainfully employed and allowed me to seek higher learning and excel in every undertaking. For that, I am eternally grateful.
Community is an integral part of our experience. It’s the net that catches us when we fall. The sickle cell community is a circle of strength; patients, families, friends, healthcare professionals, caregivers and advocates all united by a shared experience. It is in this circle that I found support, understanding and hope. That is why community initiatives and support organizations are so critical, not just for emotional wellbeing, but for survival.
One such organization doing life-changing work right here at home is the Sickle Cell Association of Antigua and Barbuda. Led with passion and persistence by Dr. Edda Hadeed, SCAAB is a beacon of hope. Dr. Hadeed has been a tireless advocate for sickle cell awareness, early detection, and holistic patient care. Under her leadership, this grassroots nonprofit provides education, medical outreach, public awareness campaigns and direct support to families affected by sickle cell disease in our twin-island state.
One of the most impactful services offered by SCAAB is the “Clinic day”, held every Wednesday at the Sickle Cell Clinic located at the Holberton Hospital. These clinic days are more than medical appointments. They are opportunities for education, counseling, and community building. It’s where we, as patients, feel seen and heard. Additionally, it functions as a safe space for warriors to connect, share experiences, vent about struggles, and celebrate each other’s milestones. This local community has taught me that while our battles may be personal, they are not isolated. Together we are strong, and our voices matter.
The Sickle Cell Association of Antigua and Barbuda relies on donations and community support to continue its work. Your contribution, whether financial, vocal or voluntary, helps sustain a lifeline for patients who are often left in the shadows of our healthcare system. Information on how you can lend your support to their efforts can be found at www.sicklecellantigua.org.
To those reading this who have sickle cell: you have every right to dream big. You are not a burden. You are not broken. Your life is valuable, and your goals are valid. Keep pushing forward.
This World Sickle Cell Day let’s recommit to supporting one another. Let’s amplify the voices of those who live with this disease. And let’s ensure that no one in Antigua and Barbuda, or anywhere, has to fight alone.
