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TAKING POSITIVE ACTIONS TODAY TO PREVENT A PAINFUL TOMORROW.

ADEJOKE EJIOFOR





"Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek." — Barack Obama


A new acquaintance asked me "What is sickle cell disease?" . This question made me realize that a lot of people still do not know what sickle cell disease is and how serious it is.


Briefly about sickle cell disease:

  • Sickle cell disease is a red blood cell disorder

  • Sickle cell diseases is inherited

  • Sickle cell disease can affect anyone regardless of race or ethnic group

  • Sickle cell disease can cause a lot of pain

  • sickle cell disease can become fatal

  • The only cure for sickle cell disease is bone marrow transplant or stem cell transplant

  • It takes both parents with sickle cell trait to have a child with sickle cell disease.

  • In most developed countries and some developing countries sickle cell disease is usually diagnosed during routine new born screening.

  • A simple blood test can tell if you have the sickle cell trait

  • Genetic testing can help determine if you have the sickle cell trait or which type of sickle cell disease you have.

Sickle cell disease is a very serious and life threatening disease. Sickle cell disease comes with a lot of complications that can have serious adverse effects on body organs. Pain crisis is one of the many complications of sickle cell disease. The acute pain usually comes unexpectedly and can affect different parts of the body. It can last for a fews hours and could also go on for days or even weeks. The first symptom of sickle cell disease in infants and toddlers is usually the painful swelling of hands and feet. called dactylitis or popularly known as Hand-Foot Syndrome. In essence sickle ell Pain is a life long condition.


Bone marrow or stem cell transplant is the cure available for sickle cell disease but it is not available to all and it is very expensive. Some sickle cell Patients are disqualified from bone marrow transplant based on their age. Some others are disqualified because they have major health challenges and might not be able to withstand the bone marrow transplant procedure. A lot of people don't see bone marrow transplant as an option because they cannot afford it.


In my birth country Nigeria, a lot of people can hardly afford 1 square meal a day. This can be a great ordeal for a person battling sickle cell disease who needs good nourishment to fight the disease so bone marrow transplant is farfetched.


I advocate today because I want to help put an end to the pain.; I advocate from January through December because I want a future where sickle cell disease becomes a thing of the past. The actions that I'm taking today advocating for sickle cell disease is to prevent a future with painful crisis.


September was sickle cell awareness month. A lot of events were organized by advocates with the goal of improving the quality of life for the people living with sickle cell disease and working towards a positive transformation for the sickle cell community. The advocacy effort all comes down to one thing; To put an end to the pain that comes with sickle cell disease.We must all continue to do what we can and collectively we will see the change that we desire and the future that we hope for..


"I alone cannot change the world, but I can cast a stone across the waters to create many ripples." — Mother Teresa






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