‘The pain is hammering into my bones’. Unpredictable episodes of exhausting pain from a life threatening disorder called Sickle Cell is causing this pain. Sickle Cell is a disorder that can cause pain to strike at any time, then, suddenly the sufferer is in agony.

When pain strikes the sufferer may need to spend weeks in hospital on extremely strong pain relief medication and treatment to minimise the pain and prevent tissue damage to vital organs. Just imagine, the loss of study time to a student, or work time to a worker - be it the sufferer or both the sufferer and the parent or carer! In fact both work/study and home life are affected.

This child is another sufferer. This time from Thalassaemia. Thalassaemia is another blood disorder, somewhat like sickle cell, that if not treated leads to suffering and death. In some cases inadequate treatment also leads to further internal tissue and organ damage.

As I became aware of tragedies like the ones described here, I wanted to know more about Thalassaemia Major and Sickle Cell. To find out more about the reason some of our children are suffering and dying I visited Randolph Prime based at Sheffield Sickle Cell and Thalassaemia Foundation, at the Wicker ACE Centre.

Many people carry the genetic trait of Thalassaemia or Sickle Cell, both are inherited and are not infectious. These carriers are not affected by the illness and, through a freak of nature, they are protected against malaria which is why it is common in parts of the world where malaria is common. The problems begin a generation later, if two carriers raise a family each child has a 25% chance of being affected.

Sickle Cell sufferers have red blood cells that, at times of a ‘sickle cell crisis’ change shape, forming rigid sickles that block tiny blood vessels and the oxygen supply causing pain and tissue damage, particularly affecting joints. Thalassaemia is a more predictable disorder. It doesn’t cause painful symptoms, but sufferers cannot make enough red blood cells and need regular transfusions.

When you attend your GP you can find out if you are carrying either of these disorders with a simple blood test. This is talking to tackle an issue that will affect future generations around the community we have chosen to live in.

If you have fears or anxieties or you or your family are affected by these disorders, you can contact the Sheffield Sickle Cell and Thalassaemia Foundation (SSCATF) on 2753209. Based at the ACE centre on the Wicker they offer support, information and advocacy, education and training to sufferers, carers and professionals.