Dispelling the stigma attached to blood disorder

Prakash Jaga, 23, from Sherwood was diagnosed with thalassaemia when he was a baby.
Thalassaemia is a genetic disorder of the blood that causes a form of anaemia, decreasing the number of red blood cells. The condition is hereditary and mainly affects those of Mediterranean descent and is also common in the Arabian Peninsula, Iran, Pakistan and southern China.
In South Africa, it is found mainly in those of Indian descent as well as in the Greek, Italian and Portuguese communities.
There are approximately 250 to 300 Indians in the country who have the blood condition.
There are two types of thalassaemia - minor, a less severe form where patients present a mild form of anaemia and major, a chronic condition requiring lifelong medical intervention.
The disorder is inherited from both parents who are carriers of thalassaemia minor. Parents who are carriers have a one-in-four chance of passing on the condition to their children.
Treatment of the condition requires a lifelong cycle of blood transfusion every three to four weeks for the rest of the patient's life.
Dr Yasmin Goga, a paediatric haematology consultant, said the condition presented itself between the ages of six months to a year. She said without treatment it would eventually lead to car-diac failure and death within the first two years of an affected child's life.
Last week Saturday marked World Thalassaemia Day. As a result, Jaga and the South African Thalassaemia Association are aiming to raise more awareness about the condition.
Jaga said when he told people about it, they assumed that, because it was a blood disorder, it was related to Aids.
"A lot of people are ignorant. They hear about it and then take a step back from me because they think it's contagious. I have had women who have been out with me and when I tell them, they take a step back. They think it's something similar to Aids."
But Jaga said having the condition has not prevented him from living a normal, full life.
"You get used to living with it. Initially it is a shock for parents and it's hard for the child to get used to it because you are getting injected every three weeks with a drip.
"But you slowly adjust to it and you come to realise that, if you don't do it, you will die. Without the blood transfusion you become weak and oxygen stops running in your body and your organs will give up."
He said with the help of the association they were trying to educate people about the disorder.
Jaga, who works in administration for a travel company, said every three weeks he took a day off work to get his treatment done, saying some days were "good" while others were "tiring".
He said people needed to have a positive outlook on life. "There is a lot that you can do. If you are on the treatment, you can live a long and happy life. If people ask you about it, educate them."
With transfusions every week, thalassaemia patients suffer with iron overload which gets deposited in their liver and can eventually lead to cardiac failure. In an attempt to prevent this, the patient is injected five times a week.
However, because of the invasive manner of the injections a new drug was developed, which is taken orally. The South African Thalassaemia Association campaigned for the drug to be made available to South Africans in 2006.
Sunil Soni, chairperson of the association, said the core function of the group was to provide patients and extended families with support regarding the treatment of the disorder. He said the condition could cost approximately R300000 a year.
"The condition is very complicated, so we have the association to improve the quality of life for all living with it. There is not enough awareness about this condition."
Soni said the condition was sometimes misdiagnosed and presented as anaemia.
"There are many people who are carrying the gene but they don't know it. So our duty is to empower people so that they can make educated decisions about the future of their family."