An 11-year-old sickle cell patient says there should be more support for those with the disease, following the death of Richard Okorogheye, a 19-year-old student who disappeared after spending a year protecting himself from the disease.
Although still in primary school, for the past four years Miai Phillip has campaigned to raise awareness of the disease which affects around 15,000 people in the UK, who are mostly of African-Caribbean descent.
Miai calls on the medical profession and society at large to better understand the disease, “just as people know about cystic fibrosis, diabetes or cancer,” she says.
Speaking directly to healthcare professionals, she said, “They shouldn’t be saying, ‘I’ve never heard of this before, or I don’t know what it is,’ you have been in this profession, so know your profession. “
Sickle cell anemia is an inherited disease in which the body produces unusually shaped red blood cells that clump together, blocking blood vessels.
This results in painful episodes called sickle cell crises, which can last for weeks. In some cases, these can lead to organ failure and even death.
Sitting next to her mother, Miai describes how sickle cell disease can sometimes prevent her from enjoying her childhood, as she has to constantly monitor her temperature and water levels while making sure she takes her medications.
“I always have to be level,” said the youngster from south London.
“Sometimes I can be anxious to do a sleepover or see a movie, then that can all change in a second and I can end up in the hospital for a blood transfusion.
“It’s frustrating because you just feel like you want to live, to be carefree.”
More information about this article Read More
This notice was published: 2021-04-30 12:20:00