For 15 years, Wilfred Sultana has been battling a debilitating illness… except that he has no idea what it is. His mysterious enemy has no face, so he cannot find it to fight back.
I compare my illness to a tsunami: it attacked, withdrew, but left destruction in its wake
That means that on top of being ill, which is “already ugly”, he never knows how he is going to feel the next day and always expects to wake up worse. He cannot take specific medication in the hope of recovering, and not knowing what to do just adds to the anxiety.
Mr Sultana is one of an estimated 25,000 Maltese sufferers of thousands of rare diseases. But his is so rare that it does not even have a name.
“I compare my illness to a tsunami: it attacked, withdrew, but left destruction in its wake,” he said.
In fact, Mr Sultana’s unexplained neurological condition has stabilised over time, but he is still living with the havoc it wreaked on his body.
Fifteen years ago, the sports writer, ironically, lost his ability to write. He ended up in a wheelchair, could not speak and his sight deteriorated.
Seven visits to London’s National Hospital for Neurology & Neurosurgery did not shed any light on his baffling disease. His DNA was even sent to a specialised institute in Paris, but that yielded no answers either, and he ended up undergoing a brain biopsy, which failed to reveal anything.
But Mr Sultana is a positive person and has remained active against the odds.
“I have to,” he insists. “You cannot let go and just stay in bed.”
Despite his poor state of health, Mr Sultana is about to launch the 10th edition of the yachting directory he started back in 1976.
“Since I got sick, I have done four,” he said, adding that it has kept him going.
He was speaking on the occasion of Rare Disease Day 2012, which was organised locally for the first time by the Malta Health Network (MHN), and fell on an equally rare day – February 29, which the calendar only marks once every four years.
About 6,000 to 8,000 rare diseases exist and are defined as those that affect fewer than one in every 2,000 persons of the population.
The message of the event, which aimed to raise awareness of these diseases and show solidarity towards sufferers, was summed up in its slogan – Rare but strong together.
Mr Sultana felt the benefits of the initiative, saying he derived courage from the feeling that he was not alone. Solidarity helped, irrespective of whether the patients knew what they were suffering from, he said. The event was held at Mater Dei Hospital, which offers specialised treatment to these patients, who are also sent overseas. The National Highly Specialised Overseas Referrals Programme sent over 300 patients, suffering from rare diseases, abroad last year, said Chief Medical Officer Natasha Azzopardi Muscat.
Among the problems of rare diseases is the fact that they are hard to diagnose, meaning they cannot be nipped in the bud, while expertise is scarce, said MHN vice-chairman Philip Chircop.
Common symptoms may cover the gravity of the condition and then it is too late.
He hoped research and technological developments would continue to find ways to treat these illnesses.
The network includes about 30 NGOs that represent patients, giving them a voice on health-related issues both at a local and European level.
At yesterday’s event, participants joined those in 40 other countries at the same time to hold hands and raise them as a symbolic gesture to support those who are suffering, but do not know from what.