Just over 8 years I met my beautiful wife Georgie. Tragically, my wife’s cousin George had just lost his life, after battling Thalassaemia Major for 38 years. Thalassaemia Major is a blood disorder that requires regular transfusions to boost haemoglobin levels in the blood. However, these transfusions can lead to a build-up of iron and this can cause serious side effects, including diabetes, heart failure and liver disease.
The history of Thalassaemia Major is quite shocking. It was described for the first time in the early 1920s by a Detroit pediatrician who recognised similar symptoms of anemia, a large spleen, and characteristic bone deformities between some children of Mediterranean descent. Children commonly died within months of being diagnosed.
From the end of the 1950s transfusions were given to patients when their hemoglobin reached extremely low levels but, in any case, the patients died after a few years of infection or heart failure. Between 1949 and 1957, only 9% of the patients reached the age of 6 years and at the end of the 1970s, half of patients had died before reaching 12 years of age.
According to the American Academy of Family Physicians, those with beta thalassemia major, on average live 17 years and most with the disease generally die before their thirtieth birthday.
There is currently no cure for thalassaemia major and treatment must continue for life.
The Thalassaemia and Sickle Cell Society of Australia is a not-for-profit community organisation that provides a support network for Australians affected by genetic blood disorders. They also seek to raise public awareness of the disease, and to encourage the public to donate blood to the Australian Red Cross Blood Service. Blood donations are critical as people affected by genetic haemoglobinopathies, require regular blood transfusions in order to live and manage their condition.
This year I have decided to try to help raise money for this great organisation. Given the challenges people suffering such blood disorders face, I thought it only fair that I challenge myself too. Therefore, from 1 January 2017 to 31 Decemeber 2017, I am giving up alcohol and aiming to run 1,000kms.
Whilst this might be challenging for me, its nothing compared to a lifetime of blood transfusions and crippling symptoms.
If I can please encourage you to help me raise money for this worthwile cause, or at least to donate blood to the Red Cross.