Why I Share My Health Journey on Social Media

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by Tito Oye |

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I share much about my journey with sickle cell disease on social media. I find it to be a handy tool in raising awareness, because it allows me to do so many things.

For example, I can share facts about sickle cell disease, as well as details about my experiences dealing with it every day. I can make meaningful connections with other members of the sickle cell community, as well as with doctors all over the world. We all share our tips, tricks, and concerns with one another.

Recently, I have found that my use of social media has been handy for raising awareness about the importance of giving blood.

Tito begins a process she has every six weeks called a red blood cell exchange transfusion. (Courtesy of Tito Oye)

As part of my treatment for sickle cell, every six weeks I have something called a red blood cell exchange transfusion. The simple idea behind this treatment is that if the issues are being caused by my blood, let’s just remove some of it and replace it with donated blood. It follows that if there are fewer sickle cells in my bloodstream, sickle cell’s effect on me would be significantly milder.

With the procedure complete, Tito says she’ll always be happy to part ways with sickled blood. (Courtesy of Tito Oye)

I shared these pictures on my Instagram and Twitter accounts after my most recent transfusion. The second photo shows the blood that was removed from my body and replaced with healthier, donated blood. The response the photos received online was outstanding.

Many people have heard the facts and figures about sickle cell disease, but they don’t ever see its consequences or the drastic lengths to which we must go to reduce its effects. So, for many of my online followers, the photos help to put things into perspective.

I received several messages from people saying they were shocked, and that I am brave for going through everything I go through. I also received messages from people saying they now want to start donating blood, which really touched me. I think that when people see the actual lives that their donations affect, it helps them to understand the importance of each donation.

I am grateful to have access to such a treatment, and to the many blood donors who have contributed to improving my quality of life. I also am grateful for the platforms I have to share details about my life with sickle cell disease. I hope that others will continue to learn from me and are encouraged to start giving blood.

Do you use any social media platforms to raise awareness about sickle cell disease? If so, please share your links in the comments below! 


Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell anemia.


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