September is Sickle Cell Awareness Month.
Anyone can be born with Sickle Cell disease, but it is most common among people from a black Caribbean or black African background.
Johnny Nyaaba is a nurse at the Cumberland Infirmary and is now helping people living with sickle cell through his frequent blood donations.
Johnny joined North Cumbria Integrated Care NHS Trust from Ghana last year. He works on Willow A ward.
He said: “I gave blood for the first time in this country in October last year during Black History Month
"I saw on social media earlier last year that NHS Blood and Transplant needed more Black blood donors to come forward to help save lives and how Black blood donors could especially help people living with sickle cell.
“After learning this I spearheaded the Black excellence campaign in collaboration with my Trust. I led a session to highlight the need for more Black donors to save lives.
“On October 8 last year, I volunteered to donate blood, A few days later I received a letter from NHSBT disclosing that I had a rare but important blood subtype – Ro.
"I was taken aback because I have donated blood several times in Ghana but I never knew of a Ro blood subtype despite being a nurse. I am ‘O positive’ that is all I have ever known about my blood group and type. This subtype, Ro, is apparently crucial to helping Black sickle cell patients.
“About a fortnight later, I was informed my blood was released to Leeds Teaching Hospital for patient use, and I felt proud about that - knowing that I have helped save another soul.
“I made my second and third donations in January and May this year and I have now made the pledge to donate blood regularly and I will continue to promote the movement to friends, and any audience I can get.”
People with the disorder produce unusually shaped red blood cells that can cause excruciating pain and other problems because they do not live as long as healthy blood cells and can block blood vessels.
All patients presenting with acute sickle pain should receive initial analgesia within 30 minutes and have achieved good pain relief within two hours. Acting quickly can save lives.
About Sickle cell
Sickle cell disorders are a group of illnesses which affect your red blood cells. Sickle cell is a genetic condition, which means it is passed on from your parents and you are born with it; you cannot catch it from other people.
Sickle cell disorders causes your normally round and flexible blood cells to become stiff and sickle shaped, stopping the blood cells, and the oxygen they carry, from being able to move freely around the body and causing pain. This can cause episodes of severe pain. These painful episodes are referred to as sickle cell crisis. They are treated with strong painkillers such as morphine to control the pain.
People with sickle cell are also at risk of complications stroke, acute chest syndrome, blindness, bone damage and priapism (a persistent, painful erection of the penis).
Over time people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder. Treatment of sickle cell mostly focuses on preventing and treating complications.
Did you know?
- SCD is inherited from both parents; sickle cell trait is inherited from one parent.
- SCD can affect anyone, although it predominantly affects people from African and Caribbean backgrounds.
- Approximately 1 in 79 babies born in the UK carry sickle cell trait.
- Approximately 15,000 people in the UK have sickle cell disorder.
- Almost 300 babies are born in the UK with sickle cell each year.
- A simple blood test will tell whether you have sickle cell trait or the disorder.
- Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
- Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis.
The only possible cure for the disorder is a bone marrow transplant but this is only possible for a limited number of affected individuals who have a suitable donor. A medicine called Hydroxyurea, can significantly reduce the number of painful crises.
You can find more about Sickle Cell disease here.
Finding out as much as possible about sickle cell disease may help you feel more in control of your illness.
The Sickle Cell Society is a UK charity for people with sickle cell disease.
Their website has a wide range of useful information, including news about research into the disorder.