BEIRUT: When Amal began experiencing dizziness, weakness in her knees and pain in the eyes, doctors told her it might just be low blood pressure.
It took a while before she was diagnosed, at 33 years of age, with multiple sclerosis (MS), a disease that damages nerve cells in the brain and spinal cord.
MS, which affects up to 2.5 million people worldwide, is on the rise in Lebanon and the Arab world.
It is an autoimmune disease, which means the immune system fails to recognize cells in its own body and turns against itself.
“It’s becoming a problem, especially because it’s affecting young people in the prime of their health and planning their future,” said Bassem Yamout, professor of clinical neurology and director of clinical research at AUB’s Multiple Sclerosis Center, who diagnosed Amal. “It is not like having a heart attack at 70.”
There are about 1,500 Lebanese patients being treated for MS and 2,000 with the disease in total. Between 40 and 45 individuals in every 100,000 have the disease.
More than 60 percent of patients in Lebanon develop their first symptoms between 20 and 39 years of age, according to Yamout’s research. Two-thirds of those affected in Lebanon are women.
Many autoimmune diseases are more common in women. Research seems to suggest a link to sex hormones, especially estrogen.
In young people, the higher rate of such diseases may be because their immune systems are more active at a young age, said Yamout, who is a former Beirut lawmaker.
In Lebanon, government health care subsidizes treatment for chronic illnesses like MS and diabetes, as well as certain cancer treatments. The cost of treatment could otherwise reach up to $200 a month, Yamout said.
The prevalence of the disease has been rising rapidly in the Arab world in recent years. The number of patients rose 10 times in the last 20 years in Kuwait, doubled in Jordan and nearly quadrupled in Saudi Arabia.
Scientists do not yet know what causes the disease, though there are both genetic and environmental factors.
One possible cause is that MS increases in places where the population is deficient in Vitamin D, which humans obtain by being exposed to sunlight. The disease is more common at higher latitudes, like in Canada, Iceland and Scandinavia, where there is scant sunlight, and virtually unheard of in African countries on the equator.
Arab populations often have Vitamin D deficiency despite the abundant sunlight, probably because many avoid exposure to the sun, along with genetic factors, but the Vitamin D theory is insufficient.
Yamout said another theory may help explain the disease’s rise in modern society. The so-called “hygiene theory” says the human body must be exposed to all kinds of germs and pathogens in daily life to build up resistance.
However, modern society may be too clean and hygienic, essentially leaving our immune systems unchallenged. The immune system may be dysfunctional because it is out of practice.
There is some evidence for the theory. People with parasitic infections in their intestines appear to have a lower rate of MS.
Yamout also did not rule out the possibility that certain toxins in the environment may be to blame, but said there was no direct evidence yet. Many viruses, especially when contracted during childhood, have also been linked to MS.
While MS cannot be cured, Yamout said there were now nearly a dozen approved treatments and another dozen in the development phase which were effective in mitigating the illness.
He said that it was important to increase awareness about the disease to diagnose it early and put new patients on treatment to help alleviate the symptoms.
“If you delay treatment, the damage will be irreversible,” he said, adding that campaigns should emphasize the need to avoid unproven treatments.
Yamout was the principal author of a paper published this year in Current Medical Research and Opinion, a journal, along with doctors from Saudi Arabia, Lebanon, Bahrain, Egypt and the UAE. The paper laid out guidelines for treatment and diagnosis of MS in the Arab world.
The AUB’s MS center is one of the very few worldwide where experimental human trials were conducted to test a possible breakthrough treatment, which uses stem cells in an attempt to fight the disease.
Stem cells are a sort of raw material that can be used to create other cells in the body with specialized functions.
Scientists in the AUB Medical Center tested a new stem cell treatment, which showed improvements in animal trials, on 10 human patients.
Stem cells were taken from patients’ bone marrow and injected into their spinal cords.
This appeared to slow down the progression of the disease, with limited side effects in one patient.
Yamout said that it was possible the stem cells produce chemicals that promote growth and immunity among brain cells, reducing the inflammation that destroys them in patients who suffer from the disease.
Before she was diagnosed, Amal, who asked that her last name not be used to protect her privacy, did not know much about MS, but said she was glad more research was being conducted on the disease.
She began meeting other patients through a Lebanese Facebook page and during visits to her doctor’s clinic. She said there should be greater awareness in Lebanese society about MS and its symptoms. People should know how to deal with patients in their midst, but “without pity.”
Amal said the disease carried a stigma in parts of society. Her family urged her not to tell anyone about the illness.
“I had to get used to it on my own,” she said.
Amal takes a pill three times a week, and occasionally goes to the hospital if she feels intense pain. She said the medication slows down the progression of the disease.
She realizes that she may have to live with the disease for the rest of her life, but said her biggest fear was losing her independence.
“I, of course, wish that one day there will be a cure to the illness, but I think the possibility is that I will live with it for the rest of my life,” she said.
“Of course you fear that at some point you won’t be able to walk and you will have to rely on others,” Amal added. “That is the most awful thing, having to rely on someone else.”