As a kid in Sydney, Mohamad Dawoud loved playing football. An athletic boy, he started kicking the ball around when he was three years old and it became the passion of his life.
When he was 18 and still playing football regularly, he began to experience the first symptoms of multiple sclerosis, the incurable and degenerative disease that often leads to crippling disability.
Dawoud is now 31 and his six-year-old son, Jacob, often holds his father’s hand to help keep him steady as they walk around the house.
Originally diagnosed as football injury, the unpredictable disease first prevented Dawoud’s left eye from moving, and he was given an injection of steroids to get it back to normal.
“First I was cross-eyed in one eye, it wouldn’t go left,” Dawoud remembers of the early stages of his disease. “Then my eye went back to normal for a year. I stayed playing footy for another year.”
Then, like a bad dream, the eye problem came back. He waited for a year to get a definite diagnosis of multiple sclerosis, and all the while his disease was progressing.
“After I found out about my MS, that’s when I started getting balance problems,” he says.
Now living in Georges Hall, southwest Sydney, Dawoud can’t work, can’t drive, can’t speak clearly and often falls over.
The day of our first interview he explains that he doesn’t want his photograph taken until the following week, after the stitches in his head — the result of a bad fall — are removed.
Married, with three small children and another on the way, he has the relapsing-remitting type of MS, where rampant inflammation in the brain and spinal cord destroys the outer covering of nerves.
This leaves lesions in the brain and on the spinal cord — visible in magnetic resonance imaging scans — and can lead to a wide range of disabilities.
MS can affect walking, speaking, seeing, bladder and bowel control, memory and brain function.
More than 25,000 Australians live with the degenerative disease and three times as many women as men have it.
It was Dawoud’s neurologist, Ian Sutton, who told him he had MS. “I never knew,” Dawoud says. “I never knew what it was all about or how it happened.
“My sister and brother came with me to the hospital. When the doctor told my sister, she cried and walked out. I thought: Why’s she crying? But now I know why.”
His sister knew Dawoud’s life would be changed forever.
“As soon as I found I had MS, I stopped playing footy,” he says. “I became less active and I was depressed.”
He was first prescribed Avonex, an injectable drug, and then he was moved to an interferon drug called Rebif, which also had to be injected three or so times a week.
Finally he was prescribed Tysabri, a monthly drip, which he was on for four years. Unfortunately, a common virus in his blood — and in the blood of half of the population — meant he couldn’t continue with Tysabri because the drug could open the door to a potentially fatal explosion of the virus in his brain.
He switched to another drug, Gilenya, but his multiple sclerosis broke through that barrier and inflammation started up in his brain again.
A final option was a trial under way for a form of stem-cell treatment at St Vincent’s Hospital in Sydney. Dawoud first had his blood harvested for stem cells, followed by intensive chemotherapy to destroy his immune system. Frozen and then thawed, the harvested stem cells were dripped back into his body, and these cells are at such an early stage they haven’t developed the flaws that trigger MS. Following this reboot, his immune system slowly grew again while he waited it out in an isolation ward at the hospital.
When he recovered, the progression of his MS halted. His existing disability is still there but, ideally, it won’t get worse. And he will no longer need drugs.
It wasn’t an easy decision to make. The Australian trial was a new one and the chemo treatment was frighteningly debilitating. Available to paying customers in Mexico and Russia, the therapy remains a semi-experimental and largely untested procedure here.
“I was scared,” Dawoud says. “I heard about it, but then I also heard people had gone overseas to do it. And they wanted to do it for me here.
“I had no other choice because I had no other medicine that would help me. I was getting worse. It was either that or going into a wheelchair. I was planning to go get a walking stick to walk around before I did this.”
His wife and his relatives were worried about the potential risks of the treatment. He married when he was 25, years after MS had taken hold of his life, and his wife entered the marriage with her eyes wide open.
“She saw that I was sick, but she could see I was a normal person,” he says. “She made me feel like a normal person.”
The chemo and stem-cell treatment scared all the Dawouds. “They weren’t sure what was going to happen,” he says. “But we had no other choice. Because we tried so many other medicines and nothing worked.”
Six years ago he went into hospital to get it started. The chemotherapy made him vomit and gave him diarrhoea. “All my hair fell out,” he says. “It (the chemotherapy) wasn’t as strong as the cancer one, but it was strong. It kept me in hospital for a month.”
A couple of months after his hospitalisation, Dawoud was pretty much back to normal — as well as he was before the treatment — and the progression of multiple sclerosis in his central nervous system had stopped.
Six years later, with no drugs, it has not returned. “After hospital, I had a bald head,”, he says. “Not straight away, but after a while I started feeling more improved.” His disabilities did not deteriorate and he no longer had to take any drugs or fear the potentially fatal virus in his blood.
The first night he spent at home after the treatment, his wife went into labour and after 18 hours his first child, Jacob, was born.
She was overdue, and Dawoud believes the stress of seeing him in hospital delayed the birth. As soon as he was home, he thinks, she relaxed and her labour began.
That baby is now the careful and caring little boy who keeps an eye out to see if his father needs a helping hand; who helps to steady him as he moves around. Jacob was followed by another son and a daughter. A fourth baby is on the way.
Doctors long ago confirmed there was a genetic element to multiple sclerosis, and Dawoud’s cousin also has been diagnosed with the disease. He recommends the treatment to her and to anyone else with MS.
“I’ve told many people: See if they can do it for you, or get someone to do it,” he says. “I told them to go see if they could get on the trial. I told them that.
“I couldn’t tell my cousins or anyone about my MS for a long time.
“I was depressed when I first found out about my MS, the first two or three years I was depressed, I never wanted to tell anyone. I thought I was getting worse because I was depressed.”
These days, Dawoud is more on top of things; he goes out to the MS Society and visits the gym there.
“It’s making me stable, as in I’m gaining muscle,” he says.
“It’s just when I’m depressed, I get worse. It’s getting me out of the house and letting me see people. Before, I couldn’t see people, but now I see the people at the MS Society who are going through the same thing I’m going through. It helps me.”
Multiple Sclerosis
- MS is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves.
- It is characterised by sclerosis — a Greek word meaning scars. These scars occur within the central nervous system and depending on where they develope, manifest into various symptoms.
- MS affects more than 25,600 in Australia and more than two million diagnosed worldwide.
- Most people are diagnosed between the ages of 20 and 40, but it can affect younger and older people too.
- Roughly three times as many women have MS as men.
- There is no known cure for MS.
Local trials highly promising, despite limitations
The Australian medical breakthrough that has led to some multiple sclerosis patients discarding their walking sticks began with animal studies in the 1960s and 70s.
First, mice with a form of MS were successfully treated with a variant of the treatment; then doctors began noticing that MS patients treated with chemotherapy for cancer were coincidentally reporting a slowing of their auto-immune disease as well.
More recently, clinical trials using the procedure to treat MS patients have had mixed success. Treatment of patients with advanced MS, known as the secondary progressive phase of the disease, has not been as successful as that of young, early stage MS patients with the inflammatory relapsing-remitting type of the disease.
The St Vincent’s trial was the first successful Australian trial using chemotherapy and blood stem-cell transplants to treat mainly young, early stage MS patients. The trial’s lead scientist, haematologist John Moore, describes it as “really promising”.
“We’ve been able to show that the immune system in MS patients corrects, and the cells and immune system seem to be more anti-inflammatory than inflammatory after the stem-cell transplants,” Moore says.
“So we’re quite excited about those findings because that’s the first time anyone has ever shown that.”
The trial patients — 48 so far — have been examined regularly for years after the treatment, and 85 per cent to 90 per cent have “done really well”, Moore says, without drugs and with no MS progression.
Technically known as autologous haematopoietic stem-cell transplant, the treatment also has been tested in a large and yet unpublished US trial, which Moore says has also had “extremely positive” results. Two further randomised international trials are in the planning stages and due to start soon.
“Given these patients stay off MS medications after their stem-cell transplants, we’re doing something to change the immune system that was previously attacking the central nervous system,” Moore says.
“Our objective is to stop patients having relapses and deteriorating function, but what we did notice in virtually only relapsing-remitting patients is that about half of them get an improvement in their disability.”
Unfortunately the treatment does not have the same effect for patients with the secondary progressive type of MS. “These findings are important, but we’ve got to caution also that we need more phase three (randomised controlled trial) data,” Moore says. “And, second, this is about chemotherapy, so there are obvious toxicities. Patients lose their hair. They have low blood counts, they put themselves at risk of infection and they have to spend three to four weeks in an isolation ward in hospital.”
Women of child-bearing age, he adds, usually become infertile after the treatment.
About 20 per cent of patients in the trial had organisms growing in their blood cultures or urine after the treatment. Ulcers in the throat or bowel and persistent diarrhoea were problems dealt with during the recovery period, along with shingles and urinary infections, although patients began to recover as soon as their new immune systems kicked into gear.
The treatment is also cost-effective, Moore says. One cost-benefit analysis found the cost to the community of looking after one patient with MS was about $48,000 a year, compared with a one-off cost of about $60,000 for the AHSCT treatment.
https://www.theaustralian.com.au/news/inquirer/stemming-a-nasty-malady/news-story/f96e7f344785534a4dfb2b349def8e2a