Let’s talk sickle cell: jennifer & CHI CHI
This is Jennifer Phillips
This is the beautiful Jennifer Phillips. Born on the 20th December 1995. A very charismatic, prayerful and uplifting girl who was also a singer and always the type of friend who went over and beyond for those she loved and cared about. An advocate for sickle cell disease.
JP sadly passed away on the 15th September 2021.
This is Chi Chi
He is 26 and lives in Borehamwood. recently returned from a trip to Zambia, his home country. He was able to visit a hospital as well as have conversations with individuals who have the sickle cell disease as part of his journey on raising awareness.
For Chi Chi, shedding light on sickle cell disease all began in 2022 after a close friend of his who he referred to as Jennifer or JP passed away from complications relating to sickle cell.
Ayo Ogundeyi
My conversation with ChiChi mostly revolved around his friend Jennifer and keeping her legacy alive. They met in university, and he quickly saw her as a big sister. They shared many memories together, but he especially recalled how she was one of the first people to call him and pray for him on his birthday during lockdown. JP was an advocate for sickle cell and as sad as her passing is, the fact that she passed away during sickle cell month spurred him to keep her legacy alive. Last year, he posted a video at the same hospital where he went to visit her which received a lot of positive feedback. This further inspired him to research more on sickle cell.
He discovered that people living with sickle cell can be affected by the weather - especially cold weather, and recently found out whilst in Zambia that there are different types of sickle cell disease. Something important to note is that if Jennifer had not told him she had sickle cell, he would not have known. It is not something that can be noticed solely based on the appearance of an individual and can be classed as an invisible disability.
Sickle cell disease in more prevalent in Africa than it is in the UK, where there is a stigma of people suffering quietly and not being as vocal about what they are going through. Sadly, medication is more accessible to the individuals in the UK compared to countries Africa in
terms of price and availability. From the conversations he had with individuals in Zambia, therefore is somewhat a superstitious atmosphere when it comes to giving blood/ blood transfusions despite it being helpful for some individuals living with sickle cell.
To end with, he emphasised that more awareness needs to be raised, whether that is getting the perspective of someone that is living with sickle cell or simply researching it and sharing what you learnt.
Lastly, genotype testing! There is a saying that prevention is better than cure- find out what your genotype is and that of your partner’s before having babies as it is the child who will be affected if they are born with sickle cell disease. This is also something Chi Chi holds with him in terms of dating and settling down in the future.
https://www.nhs.uk/conditions/sickle-cell-disease/
https://www.cdc.gov/ncbddd/sicklecell/materials/infographic-get-screened.html
