The number of Sickle Cell anaemia sufferers in Northampton has tripled since 2004.
A father whose daughter died on a flight to Canada from the disorder has called for more research to be carried out.
Sefton Lawson's daughter Sabrina Sharpe died whilst having episodes of severe pain known as a 'Crisis' on a plane.
She had Sickle Cell anaemia a condition where the red blood cells become sickle shaped like a 'C'.
Normal red blood cells are smooth and round, moving easily through blood vessels to carry oxygen to the body. Sickle-shaped cells don't move easily through blood.
They're stiff and sticky and tend to get stuck in blood vessels causing the sufferer immense pain.
"She had Sickle Cell from 2 years old and suffered really badly. The medical profession didn't know a great deal then and still don't now," said Sefton.
Sickle cell disorders can also cause swelling of the hands and feet, with stiff painful joints and extreme tiredness especially during the winter period.
"When it got colder she developed terrible headaches and sometimes had seizures, it really is a terrible illness," he said.
Sickle pain can happen at anytime so it is important for families and sufferers, as well as carers and teachers, to know the best ways of coping.
Pressure on the services
Doctor Shahid Ali is a consultant paediatrician a Northampton General Hospital and works with children suffering from the disorder.
"Sickle Cell though primarily a blood disorder, affects all the vital organs. The biggest problem with the disorder is the severe pain episodes with causing the sufferer to have morphine infusions, which is not nice," said Dr Ali.
Sickle Cell is the most common inherited disorder in the world. 1 in 20 African-Caribbean people in Northamptonshire suffer from it and each year the number grows. But the funding for research has stayed the same causing a strain on NHS services.
"Since 2005 we started to look for the condition in new born babies to make earlier diagnoses to help keep them safe. Now we are finding more sufferers and need extra funding to help make the most out of our services," he said.
If you suffer from the disorder it is advised that during the cold weather you ensure your body is correctly protected by wearing warm clothing to lessen the chance of a 'crisis'.
If you are from the African - Caribbean community and are unsure if the trait runs in your family then speak to your G.P about getting tested.
For more information on Sickle Cell visit the Sickle Cell society website or call 0207 848 6634.
Sickle Cell Society
Wikipedia Sickle Cell