Almost every evening, before going to sleep, Mary (not her real name) has to dilute medicine in sterile water, pour it into a pump and attach it to her abdomen through a needle.

For a whole night Mary has to make sure the needle remains attached to her abdomen so that the life-saving medication is pumped into her body.

Apart from the obvious inconvenience, and pain, of having a needle in her body for eight to 12 hours at a go, Mary has to contend with technical hitches. "Sometimes the battery runs out right in the middle of the night, which means that all the pain and discomfort was all for nothing."

For years, Mary has had to go through this nightly ordeal to keep the level of iron in her body under control. It is one of the repercussions of regular blood transfusions, something that she has had to contend with for almost 40 years.

When just four years old, Mary's mother realised that something was not right - her daughter was looking pale and feeling tired. "She took me to a number of doctors, who said that I was probably suffering from iron deficiency and recommended iron supplements. But she was reluctant to give me supplements without knowing exactly what I was suffering from."

So Mary's mother took her daughter to Scotland where she was diagnosed with thalassaemia and started receiving regular blood transfusions.

For years, the blood transfusions and folic acid supplements were enough for Mary but when she turned 21, Mary started suffering from iron overload, which threatened her vital organs. That is when her ordeal with almost nightly hours-long treatment started.

"The pump is a huge hindrance. Sometimes I run out of areas where I can inject the needle because my whole abdomen gets swollen. Even finding clothes that do not irritate the sores is a task and wearing a seatbelt is a painful ordeal.

"I know of many patients who stop taking the medication simply because it is such a burden on their lives, especially the younger ones. I only do it because I know how dangerous it is to stop. Over the past three years four of my fellow Maltese patients died due to iron overload because of lack of compliance with the treatment regime."

The silver lining is that a new drug, Exjade, is now on the market.

Manufactured by Novartis, the same company behind the older drug, Exjade replaces the need for the intravenous medicine with a once daily soluble tablet.

"Having such medication would make a tremendous difference to our quality of life, as well as adherence to the treatment," Mary said. The only problem is that the new medication is not yet available on the NHS and is financially prohibitive for patients themselves to buy.

"I appeal to the authorities to look into this new form of medication. I have already lost a number of friends to complications emanating from thalassaemia. I do not want to lose anymore due to lack of compliance to medication," the mother of one said.

What is thalassaemia?

Thalassaemia is a hereditary condition which results in the body forming red cells containing a smaller amount of the haemoglobin, which gives colour to red cells, consultant physician Mario Farrugia said. Haemoglobin has the important role of carrying oxygen from the lungs to other tissues.

Dr Farrugia said patients with the more severe cases of thalassaemia normally depend on regular blood transfusions, which can, in turn, lead to excess iron depositing itself into organs, like the liver and heart, resulting in damage. In order to prevent this from happening, patients have to depend on drugs - called iron chelators - that get rid of the excess iron. Until recently these drugs were only available in an injectable form and had to be injected through a pump over an eight-hour period on a daily basis.

"This creates a degree of inconvenience in these patients' lives, which is sometimes severe enough to make them stop or decrease the injections, exposing them to the complications of iron overload."