Tito’s Story
To mark World Sickle Cell Day, we recently spoke with Tito Oye, 25, from London about her experience of living with Sickle Cell Disease, how this has impacted her life, and why it is so important to raise awareness surrounding the condition.
Tito Oye, 25, was diagnosed with Sickle Cell Disease (SCD) - a genetic blood condition that affects red blood cells (RBCs)- before she was born. As Tito’s parents are both carriers of the sickle cell gene, they have the ability to pass it onto their children but do not have the condition themselves. Since Tito has SCD, this means that she has inherited the gene from both of her parents. However, as the eldest of three children, Tito is extremely thankful that neither of her siblings suffered the same fate.
People living with SCD produce unusually shaped RBCs due to the abnormal production of a protein called haemoglobin, an essential component of RBCs that binds to oxygen and transports it from the lungs to tissues and organs around the body. This abnormal shape of RBCs increases the chances of blood cells getting stuck, ultimately reducing blood flow and causing people to suffer from sickle cell crises; severe, painful episodes which can be debilitating. Staying warm, exercising, drinking plenty of water, and eating healthy foods are just some of the ways that Tito tries to avoid a sickle cell crisis; however, this combined with other symptoms of fatigue, frequent infections, and swelling can be challenging and have a profound impact on quality of life.
Although diagnosed at birth, Tito knew very little about her condition growing up. At primary school, Tito couldn’t just live like a “normal” child, as on days when it was a bit colder, Tito had to stay inside to reduce the risk of a sickle cell crisis. It wasn’t until a friend decided to stay inside with her one lunchtime and asked why she couldn’t go outside and play, that Tito realised she didn’t fully understand herself. Her teacher at the time then explained that her blood cells aren’t a normal, healthy circle shape like the rest of her classmates, but shaped like the letter ‘C’, so they don't work as well as they’re supposed to. That moment is when Tito gained her first understanding of what SCD is, how it affects her, and why it was important for her to stay inside on colder days.
Another moment that stood out for Tito was at University when she was on a bar crawl with her friends. It was a cold, late night, meaning she was exposed to one of her triggers: a drastic temperature change. The next morning, she woke up in so much pain that she couldn’t walk. She remembers just a few hours earlier feeling great and having a fantastic time out with her friends, but with SCD, things can change in an instant. This is something we all take for granted – a fun, carefree night out with our friends, when for people with SCD, this isn’t always possible.
In May 2019, Tito found out that she had suffered from a few silent strokes, and was at high risk for another. To reduce this risk, Tito now receives an exchange transfusion every six weeks. This is when you are connected to a machine that takes out your blood, and replaces it with new blood products from donors. Every time Tito gets this transfusion, she receives nine units of blood; the average person has 10 units of blood in their body, meaning that every six weeks, Tito’s full blood volume is replaced. Although the process of the transfusion itself can be exhausting, she very quickly notices a difference in her energy levels once she has recovered.
Since 2013, Tito has been advocating for blood donation. She has arranged multiple blood drives in the past to encourage more black people to give blood, as they are more likely to have the subtypes that match people with SCD. When organising these blood drives, Tito found that a lot of people just weren’t aware that they could donate blood, and now that they do, they realise how simple it is to do so and save a life. This is something that we feel passionate about at Give Blood 4 Good, and why we work to improve awareness in young adults, not because they need encouragement to donate, but because most people know very little about blood donation in the first place.
When we asked Tito how she feels about blood donors, she said:
“It’s such an amazing, selfless act. Donors rarely get to see who is on the receiving end of a transfusion, and the fact that they do it anyway is just amazing. Blood donations can significantly improve the lives of people who the donors most likely don’t know, and it just reminds me that there are some really good people in this world. There has always been blood available for me whenever I have needed a transfusion, and for that, I am extremely grateful.”
One thing that we were shocked to hear is that people living with SCD don’t qualify for free medication on the NHS. For people with SCD who do not receive blood transfusions, they have to take pain killers, iron supplements, and a tablet to help increase their haemoglobin levels every single day; they have to pay for this medication every time. Awareness surrounding SCD in healthcare professionals is also generally poor out-with London, highlighted by the fact that one of Tito’s friends with the condition was asked by a nurse if they were sure their diagnosis was correct, and outrightly being turned away at A&E when experiencing a sickle cell crisis because they did not understand what this was.
There is a clear need to raise awareness surrounding SCD, in both healthcare professionals and the general public, to improve care and quality of life for those living with the condition.
We would like to thank Tito for taking the time to speak with us about her experience and look forward to working with her in the future to improve awareness surrounding SCD. To follow Tito’s journey living with SCD, make sure to follow @hersickedjourney on Instagram!
Follow the link below to book an appointment to donate near you!
References
National Heart, Lung, and Blood Institute. Sickle Cell Disease. Available at: https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease. Last accessed May 2021.
Blood Donor Counselling: Implementation Guidelines. Geneva: World Health Organization; 2014. Annex 1, Haemoglobin and iron: information for blood donors.Available at: https://www.ncbi.nlm.nih.gov/books/NBK310577/. Last accessed May 2021.
Medline Plus. Exchange Transfusion. Available at: https://medlineplus.gov/ency/article/002923.htm. Last accessed May 2021.
NHS Blood and Transplant. Give Blood. How your body replaces blood. Available at: https://www.blood.co.uk/the-donation-process/after-your-donation/how-your-body-replaces-blood/. Last accessed May 2021.
NHS Blood and Transplant. Give Blood. Black, Asian and minority ethic communities. Available at: https://www.blood.co.uk/why-give-blood/demand-for-different-blood-types/black-asian-and-minority-ethnic-communities/. Last accessed May 2021.