There are approximately 2.5 million people globally who suffer from Multiple Sclerosis, or MS, an auto-immune disorder in which the body seemingly attacks itself. Researchers believe that MS causes the body’s immune system to attack myelin, an insulating coating around the nerve cells.
MS is more common in northern, cooler countries but now there are 120,000 registered sufferers in Egypt, who face a number of particular challenges. The condition can often be wrongly diagnosed and they’re often unable to afford proper treatment or obtain the necessary medical, social, emotional or psychological support.
Living with MS in Egypt follows a number of MS sufferers as they face up to these challenges in a society where their neurological condition is often poorly understood and inadequately treated.
Expressing her frustration at the lack of knowledge about her disease is Shaimaa Al Sahhar, who was a university assistant professor in political science before she developed MS. She says: “When Hepatitis A broke out people made a big fuss about it – but we die every day… we’ve tried all the medication in the world. They’re supposed to be for MS but really, MS is incurable.”
Abd Almaseeh Farouk, an interior designer, talks about the lack of MS awareness, government support and effective medication. When he first went to hospital, “They couldn’t figure out what was going on with me. They thought it was psychological stress,” he says. “I took psychiatric drugs for a year despite not showing any signs of stress.”
Rancy Hossam says students like her sometimes deliberately fail their university exams in order to continue to benefit from free university healthcare. “We need guaranteed treatment so we can graduate and continue our lives,” she says. “I’ve been in university for 10 years. It’s too much.”
Dr Mona Sharaby is both a therapist and an MS patient and says getting an early diagnosis is vital. “Many are misdiagnosed for years and that’s why they become disabled,” she says. MS symptoms can include vision problems, anxiety and depression, tingling and numbness, bladder and bowel dysfunction, balance problems and dizziness, fatigue and physical weakness and sexual dysfunction.
On top of the physical symptoms are social consequences: Sherihan Ibrahim’s partner left her and their young son when she was diagnosed with MS. “In the beginning, my husband was understanding, realising I wouldn’t leave if he had MS,” says Sherihan. “But he was impatient and the problems got worse. So he got rid of me.” Al Sahhar’s husband also left her when she was diagnosed with MS.
It’s important for sufferers to remain positive. “I prayed for four years that I might die. My wife said it wasn’t right to pray for such a thing,” says Abd Al Maseeh. But he’s now joined the MS society where he volunteers to help less well-off patients.
Software engineer Ahmed Hafez has had great results using yoga, nutrition and working out in the gym to face his condition. Having moved to Germany, he finds that treatment, awareness and support there far superior to his native Egypt.
MS is the most widespread disabling neurological condition among young adults around the world and, according to the New York-based National Multiple Sclerosis Society, women are twice as likely to develop it than men. It affects the brain and spinal cord, disrupting the flow of information within the brain, as well as between the brain and the body.
There are four categories of multiple sclerosis, of which Relapsing-Remitting MS (RRMS) is the most common. Most sufferers first experience the relapsing-remitting stage with which they can often learn to live for years. About 85 percent of people with MS are initially diagnosed with RRMS and have temporary periods called relapses or flare-ups.
It is characterised by clearly defined relapses of increased disease activity and worsening symptoms. Secondary-Progressive MS (SPMS) follows an initial RRMS diagnosis. Symptoms worsen more steadily over time, with or without evidence of relapse or changes in an MRI scan. Occasional relapses may occur, as will periods of stability.
Primary-Progressive MS (PPMS) is not very common, occurring in about 15 percent of sufferers. It is characterised by slowly worsening symptoms from the beginning, with no relapses or remissions. Progressive-Relapsing MS is a rare form of MS affecting five percent of MS sufferers and is characterised by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery.
Since the making of this film, there have been some improvements in the care of MS sufferers in Egypt, with some treatments more readily available, with many of the costs now covered by the government. But these improvements came too late for Shaimaa Al Sahhar who died in April 2016.
This film is dedicated to her.
Source: Al Jazeera