Watch video report by Sally Simpson
It is World Sickle Cell Awareness day and campaigners from our region are calling for better treatment for the disease.
The inherited condition causes red blood cells to stick together, blocking blood flow and oxygen from reaching all parts of the body.
Treatment often requires regular blood transfusions. The problem is there are more people living with sickle cell than there are active donors.
Abayomi Eletu from Rotherham was diagnosed with sickle cell at around the age of 10. Born in Nigeria he's lived in the the UK for 17 years and says the treatment for the disease he received here changed his life.
He said: "I used to have several crisis in a year, an average of about four crisis a year, five or maybe six growing up as a child and every time it used to be hospital visits."
According to NHS data, there are 865 people in the Yorkshire and the Humber region who are registered as having sickle cell anaemia.
It largely affects people of African ethnicity. Experts say more needs to be done to treat the disease.
Kye Gbangbola from the Sickle Cell Society said:" What we are looking to do is to improve the quality of care which has changed little for sickle cell in 100 years. So we are wanting to share with the public knowledge so that we can improve the quality of care because at present it is very poor. We have to improve issues of access to treatments so that can patients can get pain relief and perhaps either other means of adjusting and preventing the illness."
Mr Eletu said the situation can be 'very frustrating' when people 'don't understand the gravity of what you're going through.'
He added:" Imagine feeling like someone hitting you metal in your bones constantly and it's not stopping you know it's terrible pain."
Abayomi and hundreds like him in our region hope World Sickle Cell Awareness Day is an essential step forward in increasing that understanding.
For more information and advice on Sickle Cell click here.