Sheenia Chandler, who lives with sickle cell anaemia in Wilmington Delaware, USA, is one of twenty million people worldwide living with sickle cell disease, one of the most common rare inherited blood disorders1.
Living with sickle cell disease can be challenging and makes it
difficult to participate in certain activities. Growing up, Sheenia
had to sit out gym classes at school because intense exercise can
trigger complications of sickle cell disease. And during her summer
vacations, she couldn’t go on roller coasters because the altitude
could cause her head to start hurting from the increased blood
pressure. For the same reason, Sheenia is still nervous to get on a
plane out of fear of what might happen to her.
Sheenia recalls spending months in and out of the hospital as a
child. At first, she didn’t understand what was causing the pain. She
compares the pain to the sensation of cold air passing through the
teeth but going through the bones in her body. The most common
symptoms she experiences are back pain, leg pain and headaches.
Although sickle cell was hard to manage when Sheenia was younger,
with more experience, she has learned to recognise the pain and curve
the symptoms before they escalate. Being the oldest of five children,
Sheenia talks about the joy her family bring her and the help that
gives her in managing life with sickle cell disease.