'I've had a blood transfusion every 3 weeks since I was 2 months old due to a rare disease that can kill people in their 30s'

At best thalassemia leaves you tired, weak, and pale because the body does not produce enough haemoglobin to carry oxygen around the body. At worst a dangerous iron build-up caused by regular blood transfusions could kill you if it goes unchecked. Graphic designer Ashkaan Bandoui, 34, from Acton suffers from the rare blood condition known to affect around 1,500 people in the UK. The disease mainly affects ethnic minorities and threatens life opportunities when it is stigmatised.

Ash explains: "I have been lucky enough to have all the treatments and medicines. Because I have grown up with it, it has just been part of my life. But, for a lot of people there is a stigma and they see their friends who are married and think, 'Why do I have to miss things to be in the hospital?' Having children would not affect me personally, but other people say because we have had to go through this we do not want to risk it."

Luckily the disease is only passed on when two carriers have a child, and even then it is a one in four chance of each child having the disease which is why awareness and screening for the disease is so important. However, the effects are so dire some parents may opt to terminate a pregnancy. Currently all pregnant women in England are screened for the disease.

United Kingdom Thalassaemia Society (UKTS) executive director Romaine Maharaj, 57, says things have moved on since the 60s when kids were told they had a life expectancy of five years with the disease. "There are people as old as 65 now but we have lost three women in their 30s in the last three months," she explains. She also talks candidly about the grim reality of living with the condition, describing the "bone pain", constant hospital check-ups, and regular transfusions. She even tells Ash his cheeks look yellow, asking if he's remembered to take his meds.

In 1978 she got together with other parents to get funding for research into pumps and tablets that could replace "medieval" treatment methods. To reduce iron build-up some Thalassemia patients have to sleep with a needle under the skin of their stomach, pumping in drugs to breakdown the excess iron. The lump grows and the needle position has to be changed. This invasive practice makes it difficult to treat children, and even the most diligent adult.

Because of this the main issue is none-compliant patients. Even with improvements to medicine, patients are on a strict regime of tablets with some needing a blood transfusion twice a month (Ash goes for his once every three weeks). Romaine people get complacent because "you don't feel the effect of the drug".

UKTS Some thalassemia patients need blood twice a month

Ash describes "the rebel period" when he left home and became less strict with his treatment. "At that time there was no immediate effect I could see, " he says. But, at his next hospital appointment they warned him his iron levels had gone up. The cruelty of the condition means "when it goes up it goes up very quickly, and then to bring it back down is hard".

In his 30s Ash has gone well beyond the life expectancy of the 1960s, but he has to be careful. Older patients tend to develop diabetes which brings a whole host of issues and more treatment to keep on top of.

Ash's positivity is balanced by Romaine's realism, but both share the goal of raising awareness which will ultimately leave people better informed about the impacts of the disease on a potential child, and less stigmatisation for those who endure the illness. Sadly, for now there is no cure, but there are several symptoms to look out for.

Anaemia

• tiredness and a general lack of energy
• shortness of breath
• pounding, fluttering or irregular heartbeats (palpitations)
• pale skin
• yellowing of the skin and eyes (jaundice)

High iron levels

1. heart problems – including problems affecting the heart muscle (cardiomyopathy), an irregular heartbeat and heart failure
2. swelling and scarring of the liver (cirrhosis)
3. delayed puberty
4. low levels of oestrogen (in women) or testosterone (in men)
5. diabetes

problems with the thyroid gland (hypothyroidism) and parathyroid glands (hypoparathyroidism)

Other problems

1. delayed growth during childhood
2. small stones in the gallbladder (gallstones), which can cause inflammation of the gallbladder (cholecystitis), tummy (abdominal) pain and jaundice
3. unusual bone growth, such as an enlarged forehead or cheeks
4. weak, fragile bones (osteoporosis)
5. reduced fertility – some people with thalassaemia may need fertility treatment to help them have children