Sickle cell kids helped to live well

Wednesday 12 March 2014

Anna Ngene and Maximillian Ofokajah

Hundreds of local children with sickle cell disease are living healthier, more fulfilling lives thanks to Guy’s and St Thomas’ community nurses.

The nurses support almost 1,000 children in Lambeth, Southwark and Lewisham who suffer from sickle cell disease. This is an inherited blood disorder that affects haemoglobin, the protein found in red blood cells that carry oxygen around the body.

The sickle shaped cells block small blood vessels and may cause severe pain for anything from a few hours to several weeks.  

Ten-month-old Maximillian Ofokajah from Catford has the disease and is being helped by the community team to stay healthy.

His mum, Ebere Anna Ngene, says: "I am originally from Nigeria where children with sickle cell disease sometimes die at a very young age. So when I found out Maximillian had the condition I was very worried.

"Thankfully the sickle cell nurses have been wonderful. They explained how important it is to keep him fit and well.

“Now I take extra care to make sure his medicines including penicillin and folic acid are stored properly.

“They even helped me find a new home as it is really important that where we live is warm and clean."

Sickle cell disease affects about 12,500 people in the UK. It is most common in people of African, Caribbean, Middle Eastern, Mediterranean and Asian descent.

Effective treatment is essential to improve the quality of life and life expectancy of children and young people. Guy’s and St Thomas’ community nurses provide vital support so parents can help children avoid serious complications such as severe anaemia, infections and damage to organs including the liver, spleen and heart.

Clinical nurse manager Nkechi Anyanwu manages a team of specialist nurses who see both children and adult patients at clinics and in their own homes. They work closely with hospital staff to manage the condition at home when patients are discharged from hospital

Nkechi says: "Simple things like keeping the home warm and dressing children in layers that can be taken on and off can make an enormous difference. Drinking plenty of water and eating healthy foods can also help.

“Specialist nurses support parents to learn how to recognise and avoid risk factors that can trigger a painful episode previously known as a crisis.

“By working closely with parents we can make sure younger patients have the best chance of staying fit, healthy and out of hospital.

"The aim is that children are able to lead stable, happy lives so they can do simple things like going to school regularly.”

For more information call 020 3049 5993 or email: [email protected].

Last updated: March 2014

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