Living in hope of finding a donor
Teen has blood disorder and is looking for a matching bone marrow donor
By Debbie Yong
Former school netball player P. Tharshini, who is now prone to dizzy spells, has become more withdrawn since she was diagnosed with aplastic anaemia last July. She is hoping to find a suitable bone marrow donor soon before her condition develops into leukaemia - which will be more difficult to treat. -- ST PHOTO: DESMOND LIMOnce a livewire teen, P. Tharshini now tires easily if she is on her feet for longer than 10 minutes.
The 18-year-old junior college student, a former floorball player and school netball team member, attends school three times a week now.
Diagnosed with aplastic anaemia last July, she is now prone to dizzy spells.
The condition is a blood disorder in which the body's bone marrow cannot produce enough new blood cells.
'I miss being able to go out without feeling tired and without making people worry about me,' she said.
Because she is allergic to oxymetholone, the only medication for this disorder, she requires a blood transfusion once every three weeks at the Singapore General Hospital.
Her doctors say her condition may worsen to leukaemia if a bone marrow transplant is not done soon.
There is a problem though - finding a suitable donor is like looking for the proverbial needle in a haystack.
There are about 44,000 potential donors listed in the Bone Marrow Donor Programme's (BMDP) registry, which has a waiting list of 50 would-be recipients.
Tharshini, who has been put on the waiting list since last October, has not found a matching donor. This is because a match is more likely within the same ethnic group.
Her search is effectively narrowed down to the 2,200 ethnic Indians on the registry.
Chinese make up 91 per cent of the registry, and 3 per cent are Malays. Other minority races make up 1 per cent.
Moreover, the chance of finding a matching donor in an unrelated person is one in 20,000. There is a one-in-four chance of finding a donor match in a sibling.
Tharshini's 21-year-old sister, who is pursuing tertiary studies, was found unsuitable as a donor.
Their father, Mr J. Panesilvam, 55, is currently not working while their mother, Susi Silvam, 49, is a management assistant.
With subsidies from Madam Silvam's health insurance plan, Tharshini paid $15 for each of the 10 blood transfusions so far.
'I hope donors can come forward before her condition develops into leukaemia, which might be much more costly to treat,' Madam Silvam said.
Donors pay nothing to register as volunteers, and are not compensated.
The BMDP will foot the $150 for tests which include taking a finger-prick's worth of blood.
Donors will be placed on the register within three months.
If a match is found, a transfusion can be carried out in one of two ways.
The first is a 45- to 60-minute procedure - with the donor under general anaesthesia - to remove 5 per cent of the donor's marrow from the back of the pelvic bone using a special needle.
The alternative is a series of injections to stimulate stem cell growth and mobilise the cells into the bloodstream. The cells are collected a few days later, in a process similar to platelet donation.
This takes three to five hours in an outpatient setting.
Said Ms Rabita Jamal, the programme's community relations manager: 'Bone marrow donation is non-surgical and has no known health risks on the part of the donor when undergoing the process of bone marrow donation.'
Also, bone marrow replenishes itself regularly.
The non-surgical nature of the transfusion will also have no effect on the donor's health insurance, she added.
Depending on their condition, some patients will also be listed in the international donor registry.
But the cost of transplant from an overseas donor is more costly due to higher registry fees, courier and hospital costs.
'This definitely increases the urgency of having a greater local volunteer donor database,' said Ms Jamal.
The programme aims to expand the register to 50,000, especially from minority groups, by the end of this year.
Donors have to be healthy individuals between the ages of 17 and 50.
Tharshini is hoping a donor match can be found soon.
'It's really hard for me, and the people who care for me, to get on with our lives,' she said.
debyong@sph.com.sg
