IMAGINE living in constant fear.
Imagine worrying every second of every minute of every hour of every day that you might die and leave your three children behind.
Imagine living in a world where you are in constant physical pain and terrified because you don’t know what is wrong with you.
Imagine the humiliation of soiling yourself in front of your children. Of being too sick to be able to look after them. Too weak to be able to be get out of bed.
Then, imagine finding a name to your problem and a cure to go with it. Finding a treatment that can banish the pain and give you back your life.
Imagine the joy, the relief, knowing that you are just two years away from full salvation… only to have it wrenched away from you; being told that you can no longer have that lifesaving treatment, despite the fact that it has already helped you walk again.
Imagine living in a world of uncertainty where your life lies in the hands of politicians…
If you can imagine all that, then you are experiencing only a fraction of what Marie Hadjipavlou has had to live through for the past 10 years.
In 1994, following the birth of her third son, Marie, now 42, started to become very ill. Although she had been prone to allergies, she and her husband, Skevos, soon realised this was different.
“At first I thought it was exhaustion related to the birth. But then I started to have more and more allergies and my skin started breaking out in rashes. Then I noticed that every time I ate something I swelled up and looked like someone eight months pregnant,” she said.
Before long this was followed by diarrhoea, sometimes as often as 25 times a day, and bouts of severe vomiting.
Initially, gastroenterologists told her it was nothing more than irritable bowl syndrome, and gave her medication. But her body rejected it and she became worse.
Other times she would lose her voice for weeks on end. Again, any medication she was prescribed made her worse. And when she was hospitalised and put on drips, she felt it was killing her, not helping her.
By 1999, Marie had shot up from 58 kilos to 95 kilos, despite the fact she was hardly eating any more because everything seemed to disagree with her. “I was so weak and could hardly put one foot in front of the other,” she said.
Things had got so bad that she had been forced to give up her job as an assistant nursery school teacher.
“I’d worked until then because we needed the money, but my condition got to the point where it didn’t allow me to work any more,” said Marie.
But, despite the apparent seriousness of her condition, doctors continued to fail to diagnose the problem and started telling her the symptoms were psychosomatic.
“I was told I was doing it for attention, that I was unhappy in my marriage, that I was homesick (Marie is from Birmingham, England), that I was psychiatrically ill.” The doctors even went so far as to suggest that the reason she was overweight was that she would binge eat while Skevos slept.
As her condition worsened, concern for those around her grew.
“It was a frightening time for me, as well as my family. But it particularly hurts to see the people you love the most suffering. How was I supposed to explain to my children that I needed to spend six to seven hours in the bathroom because I had no control over my bowels and was, among other things, losing constant blood and mucus? How do you think they felt when they came home and found me passed out on the kitchen floor?”
By 2000, Marie was fainting up to 15 times a day.
“I try to do my best as a mum,” she told the Sunday Mail. “I remember one day, when I was having a bit of a good day, I decided to take them to Woolworth’s. As we were in the cafeteria and I was drinking a glass of water, I felt a sharp pain in my stomach. My mother took me to the bathroom and it started. First I broke out into a sweat until all my clothes were so drenched that I had to remove them. After about half an hour I felt a bit better and joined my children in the toy section. But within moments the pain started again and I had to go to the toilet,” she said.
“It took me four hours to leave Woolworth’s, with all the to and fro from the bathroom. All I could think about was how I was going to manage to get home. In the car on the way back we had to keep pulling over. No one knows what that’s like. The humiliation of it.”
Time passed and Marie continued to shuttle in and out of hospitals and clinics. Doctors continued to poke and prod her and come up with various theories. But no one was able to figure out what was wrong. During this time, Skevos estimates they must have spent around £60,000.
By the summer of 2001 Marie was only able to eat steamed fish and drink water. Then, in January 2002, her body started to shut down. Within a month she lost 60 kilos, was bedridden and started losing her sight.
Suddenly, Skevos knew he was losing his wife and his sons were losing their mother. Things became a blur for Marie. Through word of mouth, Skevos was introduced to the Paracelsus Klinik in Switzerland, which specialises in biological medicine. At the same time, he took Marie to Dr Dinos Xydas, a doctor specialised in biological medicine.
Biological medicine treats the individual as a whole and not just the disease. Xydas explains that it takes into consideration a person’s spiritual, emotional and physical levels and tries to cure the whole, using homeopathy, acupuncture, nutrition, vitamins, herbal remedies, neural therapy (homeopathic injections on acupunctural points) and sometimes, depending on the patient, in combination with classical medicine.
“Each treatment is then tailored for each individual,” he said.
Xydas told the Sunday Mail he suspected Marie had toxic poisoning. Unable to test her in Cyprus, he suggested she go abroad immediately because of her critical state. Paracelsus said they had an opening on July 5, 2002 and so the day before, Skevos paid a visit to the Health Minister of the day, Frixos Savvides.
Savvides instantly made arrangements for Marie’s transportation the following day and the majority of expenses were covered by the government.
Marie travelled to Switzerland weighing 35 kilos. She was wheelchair-bound, had to be carried on the plane and used oxygen to breathe.
Within 24 hours of arriving at Paracelsus the doctors had made a diagnosis: chronic fatigue, pituitary-adrenal axis insufficiency, mercury toxicity, liver detoxification pathway disorder and multiple food intolerance and allergy. In fact, her mercury toxicity levels were 1043 mcg/g when they should have been less than 20 mcg/g and her lungs were only functioning at 20 per cent capacity. To date, the doctors do not know the cause of her illness.
“The relief of finally finding out what was wrong with me was huge. After all those years of being told I was psychologically imbalanced, I had half started to believe that perhaps I had been going mad,” said Marie.
The Paracelsus Klinik specialises in diagnosing and treating autoimmune diseases, all dental and toxicological problems, chronic infection disease, chronic inflammatory or infections disease, neurological diseases, ‘unclear’ disease such as chronic fatigue syndrome and fibromyalgia, and cancer and tumourous diseases.
The doctors put her on a strict detoxification treatment of injections, drips, herbal remedies and homeopathy. She was also put on special therapeutic machines that help detoxify her body.
At the time, no one thought she would make it because her symptoms were so advanced. Even the doctors at Paracelsus were pessimistic. But four weeks later she was able to walk again, had gained some weight and her toxicity levels had started to fall. The clinic said she had to return again three months later, which she did and again three months after that. But last February the government changed, and the new Health Minister, Dina Akkelidou, was not partial to sending patients to the Paracelsus Klinik, Skevos said.
“Marie was told she could go again in May and that that would be the last time. It didn’t matter that this was the only treatment that could save her life,” he said.
In November last year, the Health Ministry informed the family that Marie had received her final state-funded Paracelsus treatment last May. On behalf of Permanent Secretary Antis Tryfonides, a senior official, Kyriacos Krekos, notified the couple in writing that Marie’s case had been examined by the Ministry’s Medical Council, which had concluded that the 42-year-old could be treated in Cyprus.
The letter added: “Regarding future visits to the clinic you should make personal arrangements.”
Skevos wrote back to Tryfonides through his lawyers and requested that the Ministry inform him what treatment was available in Cyprus and why – if it existed – it had not been offered before now. The couple have yet to receive an answer to their letter. The Sunday Mail was also unable to reach anyone for comment at the Ministry.
Xydas insists: “There is no one in Cyprus who can help her. No hospital knows how to get rid of toxic poisoning or to diagnose toxic poisoning.”
He added: “No one can cure Marie here. If she doesn’t go back to the clinic she will continue to have symptoms. She will remain sick and both she and her family will suffer because of it.”
By mid-November last year, Marie already started getting weaker as she had delayed her appointment. With the help of friends and family donations they managed to scrape together the money to send her to the clinic in December.
“It’s humiliating being forced into a position where we have to ask for money. We’ve never asked for anything and now we are relying on other people’s donations, which we are so grateful for, but shouldn’t have needed to begin with,” she said.
Today, Marie’s toxicity levels have been reduced to 85 mcg/g; she is continuing to gain weight due to increased metabolic function, despite the fact that she can only drink water and eat fish, carrots and rice; and although she still has some symptoms, her strength, endurance and alertness have increased and her psychological status is much improved.
While in Cyprus, Marie goes to Xydas for treatment, having purchased her medication from Switzerland. She has weekly vitamin and mineral infusions, as well as two injections in her throat, 25 injections around her head, 14 in her kidneys and 10 in her liver. The most important injection, which if done wrongly will kill her, is through the roof of her mouth and into her pituitary gland, and can only be done at the Paracelsus.
The clinic says that her disease “can be treated and, is perhaps, reversible after following a treatment protocol. The whole treatment will take about two more years, coming two times a year to our clinic”.
But the Health Ministry refuses to send her, and a handful of other patients in mid-treatment, back to Paracelsus.
“They keep giving us excuses for not sending Marie and yet the real reason is so obvious. They just don’t want to fork out the money (each treatment costs around £9,000). If she had something like cancer they would pay. It’s because they don’t understand this condition that they won’t pay. At the moment, they’re saying they’re trying to determine if the clinic is EU-approved,” said Skevos.
But EU-approved or not, the clinic has been know to save lives, which was what counted, he said.
Thekla Kyriacou, 40, was sent there four years ago to treat eosinophilic pneumonia. Today, her condition is stable and she lives a pain-free life. “Paracelsus definitely saved my life. There was no other salvation… Marie has to go back. When I first saw her there, I thought she was going to die. She couldn’t even speak and now she is completely different.
But if she doesn’t she will get sick again because you cannot just stop a treatment midway,” Kyriacou said.
Skevos added: “I keep thinking this is a nightmare and I’m waiting to wake up. I never believed people could be treated this way. I want my wife to live. I can’t believe people can be so merciless.”
The effects of her illness have scarred Marie and her family. Her sons live in constant fear that their mother is going to die and their schoolwork has suffered because of it. Worrying if she is going to get the treatment makes things worse. As for Marie, she feels weary: “I’m a strong person you know, but this has been going on so very long and I feel tired. It makes it even worse not knowing what the future holds. But what do they expect me to do? Just give up and let myself die and leave my children?”
So what would she say if she could plead with the Health Minister?
“If you can’t understand my illness, understand that I’m a mother. A mother who’s afraid every day that she’s going to have to leave her kids.”
A Laiki bank account has been opened in Marie’s name so that she can pay to go for her treatment. The account number is: 004-08-062189.
All proceeds from a patchwork and quilt exhibition at St Paul’s Anglican Church in Nicosia this Thursday will go to the Marie Hadjipavlou appeal.
