Although not a sickle cell sufferer herself, Naomi Simpson has first-hand experience of how living with the disease can affect lives. Both of her children, Chenia, age eight, and Hannia age 3, have suffered with the disease since they were born and require daily medication.
As a single parent, Naomi is responsible for all their care needs, which can often be quite stressful. Naomi explains:
“Both of my girls take penicillin and folic acid daily as a preventative measure for the treatment of their sickle cell disease. And, if they are poorly, they take ibuprofen as well. If they go into crisis, they are given morphine at hospital.”
“A specialist sickle cell nurse taught me to identify the signs of a sickle cell crisis, which can include an enlarged spleen, swollen hands and feet or a tight tummy. So, if either of the girls display any of these symptoms, I know what steps to take.
“Seeing my children experiencing a sickle cell crisis episode and hearing them screaming in pain is heartbreaking. All I want to do is take the pain away, but I can’t so I feel completely helpless. It’s horrible.”
Although Chenia and Hannia have not yet needed a blood transfusion, Naomi is passionate about encouraging people from the black community to donate lifesaving blood. She says: “I am keen to encourage members of my community to donate blood because putting it bluntly, I never know when my daughters might need it. And the best treatment for patients is blood from people of a similar ethnic background.
“I understand as well that many patients also need blood with a special subtype, called Ro, which is more common in black donors.
"So, as a black woman myself, I urge people from my own community to sign up and give blood.
"I know sometimes people will listen more closely to those they feel they can relate to because sometimes, unless something has happened to you or someone you know and care about, you don’t see things as a priority."