On the 27th February, a handful of the student panel students, including myself, had the privilege of acting as ‘honorary researchers’ during a focus group for children with sickle cell disease and their families. For those of you who are slightly bewildered (don’t worry its nothing to be embarrassed of) ‘honorary researchers’ is the fancy way of saying: we helped out! In case you’re not sure, sickle cell disease essentially is a disease where people don’t produce enough red blood cells, and the ones that are produced can become ‘sickle’ shaped, blocking normal shaped red blood cells from passing through vessels. Such abnormality of the cells often results in tiredness, which as you can imagine isn’t fun…
Much to Vicky and Alan’s surprise, the day was rather mellow – with the exception of the hectic food run whereby the supposedly quick ‘2 minute’ wait ended up being 10, and the jerk chicken was too spicy leaving us running back and forth to the nearby food stalls for the last minute order of pork dumplings. However the pain of the biting cold was definitely nullified by the taste of warm cinnamon doughnuts.
… Anyways, while Vicky and Alan did all the grown up duties with the parents, Lily, Francesca, Abi, Reef and I had the tasks of getting creative with our participants (drawing, writing etc) which produced masterpieces such as the spectacular depictions of Abi and Reef by our wonderful artist Ekene. Somehow drawing, writing and surveying concluded in a sing along of Carly Rae Jepsen’s ‘call me maybe’ thanks to Reef’s ukulele skills.
Aside from all this, we essentially wanted an insight as to how life like with sickle cell disease actually is, in order to comprehend fully the difficulties experienced by these families. This ended up being beneficial as we not only got a grasp of how it was to be a guardian of the children for a short time, but how they felt about having the disease. Thankfully, it also happened to be a delightful experience meeting all these lovely families. Not too bad at all for a first attempt at an event like this!