How We Can Help : Sickle Cell Anemia Awareness

There are so many ways that we as a society can spread awareness for Sickle Cell Anemia, those including :

1. Educate yourself about the disease: The more you know about sickle cell anemia, the better equipped you will be to educate others about it.

2. Share information with friends and family: Talk to your loved ones about sickle cell anemia and share information with them about the disease.

3. Participate in fundraising events: Many organizations hold fundraising events to raise money for sickle cell anemia research and patient support. Participating in these events is a great way to raise awareness and support the cause.

4. Share information on social media: Use your social media platforms to share information about sickle cell anemia and raise awareness about the disease.

5. Wear a sickle cell anemia awareness ribbon: Wearing a ribbon is a simple, yet powerful way to show support and raise awareness about sickle cell anemia.

6. Donate to organizations that support people with sickle cell anemia: There are many organizations that work to support people with sickle cell anemia and their families. Consider donating to one of these organizations to help support their work.

7. Write letters to your elected representatives: Let your elected representatives know that sickle cell anemia is an important issue to you and ask them to support research and patient support programs.

Here are some sickle cell awareness groups to get involved with

1. Sickle Cell Disease Association of America: This organization works to improve the quality of life for people with sickle cell anemia through education, advocacy, and support services. (https://www.sicklecelldisease.org/ )

2. Sickle Cell Anemia Foundation: This foundation provides support and education for people living with sickle cell anemia and their families, and works to raise awareness about the disease. (https://www.scdfc.org/ )

3. Sickle Cell Disease Research and Education Society: This organization works to advance research on sickle cell anemia and improve patient care and outcomes. (https://www.fscdr.org/ )

4. Global Sickle Cell Disease Coalition: This coalition is a global network of organizations working to improve the lives of people with sickle cell anemia and raise awareness about the disease. (http://www.scdcoalition.org/ )

5. National Heart, Lung, and Blood Institute: This institute, which is part of the National Institutes of Health, conducts research on sickle cell anemia and other blood disorders and works to improve patient care and outcomes. (https://www.nhlbi.nih.gov/ )

My Story:

Sickle cell has directly impacted me in a multitude of ways. The greatest being the dazzling man from whom I received my name and my life's blood, Abu Kamara. My father was born with sickle cell disease, and when he emigrated from Magburaka, Sierra Leone to Philadelphia, Pennsylvania he would often have to get blood transfusions through an IV to increase the oxygen levels in his blood. In 2013, as he was getting a routine blood transfusion, a significant amount of air developed in his IV line and entered his body, resulting in a cerebral venous air embolism. He immediately had a seizure in which he never regained consciousness from, as he lost 90% of his brain function, resulting in brain death and him being put on artificial life support. For the next 9 years he remained on life support, until his passing two days after I turned 17, on September 27th, 2022. He was the greatest man I've known, who I hope would be very proud of me now. My website is authentically be an extension of me and my beliefs, but also a tribute to him. May his soul rest in perfect peace. My website signifies me taking one of the darkest moments in my life, and turning it into light. I no longer want him to be known as the man who was on life support for a decade, but instead the man who sparked change and inspiration in the future of medicine. And it is through MedicalWithMya that I can do that, among many other important things.

I am a carrier of the sickle cell recessive trait, and while I do not have any symptoms many carriers do. I encourage you all to take advantage of these resources and continue to spread awareness of this disease to better grow not only your understanding but the understanding of others around you. Remember, we are all in this together!

Before we finish our discussion on sickle cell--I would like to share an interesting fact. There are about 49 adult sickle cell disease centers in the United States, with 41,000 hematologists (doctors who specialize blood and lymphatic disorders) out of the 1.1 million physicians nationally. This is why we need to spread awareness, to not only help the people around us but to enact change globally. Please, join the fight for all, join the fight for sickle cell awareness.