There are myriad complex cultural and religious reasons as to why ethnic minority donor rates are so low. We dont fully understand the reasons but this has to change if more lives are to be saved, says Dr Adnan Sharif, a consultant nephrologist at the Queen Elizabeth Hospital in Birmingham and member of the National Black, Asian and minority ethnic Transplant Association (NBTA). Aneesas case is heartbreaking, but unfortunately it is not isolated. There are simply not enough minority ethnic communities donating.
In August 2012, Aneesa the eldest of three siblings who live in Birmingham with their father Manzoor, 46, a purchasing manager for a car company, and mother Resiat, 46, a primary school teacher started suffering from headaches and feeling lethargic. The following month, her GP took a blood test that revealed Aneesas platelet count platelets help blood to clot was critically low, leaving her at risk of excessive bruising and bleeding.
Aneesa was rushed to the citys Queen Elizabeth Hospital, where, two days later, she was diagnosed with aplastic anaemia after further blood tests and a bone marrow biopsy. A potentially fatal disease of the bone marrow, it affects around two people per million and is caused by a deficiency of all three blood cell types red and white blood cells, and platelets. Symptoms include fatigue and a reduced immune system, which can lead to infection and bleeding.
Blood transfusions are the best treatment for serious cases such as Aneesas, and a bone marrow transplant in which a donors healthy stem cells are injected into the patient the only cure. I felt shocked and isolated, recalls Aneesa of her diagnosis. There was no history of the condition in my family and no reason given as to why I had developed it.
She immediately had a 14-hour blood transfusion, and remained in hospital for a month to have further platelet transfusions every three days. Meanwhile, Aneesas brother Eghshaam, 18, and sister Iyla-Rose, six, were tested to see if they could be donors. For bone marrow stem cell transplants to succeed, there needs to be a close match in tissue type between donor and patient.
When it transpired that her siblings tissue types were less than a 50 per cent match, Aneesa was forced to abandon her studies because of her failing health and she was put on the organ donor list.
My doctor warned me there was a shortage of ethnic minority donors, she says. I was surprised. I naively assumed everybody who needed a donor would find one.
By the end of 2012, Aneesa had developed liver and kidney failure a side effect of the anti-inflammatory and immunosuppressive pills she had to take to protect her immune system. I had to have two litres of fluid injected through a drip every day to stop me dehydrating, she says. I grew jealous of friends leading normal lives.
Last January, Aneesas doctors widened their search to include the international bone marrow donor registry, which contains 10 million people. But, unfortunately, the lack of BAME donors is a global problem.
Although the majority of religious leaders have issued statements of support for organ donation, many Muslims still believe that to donate would contravene their religion. There are certain aspects of the Islamic faith such as the emphasis put on the respect of the dead and not defacing the body that suggest you shouldnt donate, explains Dr Sharif. He says that even though bone marrow donation a relatively simple procedure compared with other organ transplants doesnt require the death of the donor, it is viewed with similar suspicion.