An educational day for multiple sclerosis, held in Jeddah last Thursday, hosted more than 100 patients suffering from the disease along with family members and physicians. The event was a chance for patients and their families to learn more about living with their condition in addition to communicating with other patients. The educational day was organized by a number of consultants, headed by Dr. Hussein Al-Qahtani, Neurological Consultant in King Khaled National Guard Hospital. Dr. Al-Qahtani noted that multiple sclerosis had been highlighted in the US and Europe for some time now. While in the Kingdom, not much attention was given to this disease. “It's a chronic disease involving the myaline sheath, a layer that covers nerves. This layer is destroyed by immune system cells known as T-cells, which results in an impaired transmission of impulses from affected nerves,” Dr. Al-Qahtani said. One would think that the diseases had only appeared recently, since it wasn't known to most in the Kingdom, a false assumption since it had been present in other countries as well as the Kingdom for a long time. Still, multiple sclerosis is drawing more attention here, due to an increase in the number of people suffering from this condition. “The number of cases discovered in the Kingdom is increasing;” Dr. Al-Qahtani said “we don't know if this is due to an increase in incidence or a result of spreading awareness and improved diagnosis techniques.” The fact remains that little is known about this disease, although several theories have been made regarding its etiology and mechanism, certain criteria were labeled as risk factors. Dr. Al-Qahtani explains that females are more prone to develop multiple sclerosis. Moving from a country with a low incidence rate to one with a higher incidence rate is also considered a risk factor. “A study revealed that a red-meat rich diet might also be a risk factor for the disease,” said Dr. Al-Qahtani “that might explain to some extent the increase in incidence, since nowadays people eat more red-meat rich fast foods.” As for the actual size of the problem, Dr. Al-Qahtani said that doctors in King Khaled National Guard Hospital diagnose three or four new cases every month. A significant increase in the number of cases, according to Dr. Al-Qahtani, who said that in the past, one case would be diagnosed every six months. Before the recent breakthroughs in the management of multiple sclerosis, patients would end up spending their lives in wheelchairs or being bed-bound, after seven to ten years of acquiring the disease. But the good news is that now it's not as dangerous as it was. “There are a lot of newly developed medications and early diagnosis techniques, most people will actually live normally after acquiring the disease. Most people will live as long as they would have if they were healthy, since mortality rate of the disease is very low now,” Dr. Al-Qahtani added. While conferences and symposiums that target health care providers are on the rise, the multiple sclerosis patient's day was strictly organized for patients. Speakers avoided going into too much technical details, giving simple and direct tips on how to co-exist with the condition instead. The audience was highly amused when Dr. Omar Al-Wazzan, who was supposed to speak about the signs of symptoms of multiple sclerosis, preferred reading some of his poetry, which was also about multiple sclerosis. The event also included a draw and a competition, in which gifts were given to winners from the audience. The fact that there are no support groups for patients suffering from multiple sclerosis in the Kingdom made the event particularly significant, being an important source of information for the patients. “We are targeting today patients and their families,” said Dr. Al-Qahtani, who is also a member of the Saudi Multiple Sclerosis Consultants' Advisory Group, which plans to establish support groups for multiple sclerosis patients. “We are group of consultants who know a lot about the disease, and our aim today is to teach patients on the disease and to increase awareness among patients and their relatives regarding living with the disease,” he added. Dr. Al-Qahtani and his fellow physicians' call for the establishment of support groups for multiple sclerosis patients were backed up by demands from the patients themselves. Amal Abdul-Rahman, a young lady who was diagnosed with multiple sclerosis in 2001, started a forum on the Internet for multiple sclerosis patients. “I began by translating English texts on the subject, then I decided to put all that information on a website so that other patients can make use of it,” Amal said. “I found support from many people, including business men and doctors,” she added. The forum attracted more than one thousand members, mostly patients and their relatives in addition to some physicians, who monitor the content of the information published on the forum. Dr. Khulod Ba Bukair, one of the doctors participating in the event, emphasized on the importance of such interaction channels among patients. “I had this young patient who was diagnosed with multiple sclerosis. She was in a complete state of depression, having to live her life in a wheel chair,” said Dr. Ba Bukair “but when she got to know the forum, it became different. She became more compliant with therapy, she was online very often, replying to posted topics and interacting with other patients, it gave her a reason to live.” Yet, despite the great efforts and results of the forum, it can not be considered an alternative for a real support group, since multiple sclerosis patients require strict followup to assure that they are implementing the necessary adjustments in their lifestyles. “Patients should try to have healthy food,” says Dr. Khulod, “try to eat lots of vegetables, lots of fibers and fruits.” Certain types of food won't be on the menu for multiple sclerosis patients, according to Dr. Khulod, who pointed out the negative influence of red meats particularly, on the general state of multiple sclerosis patients. “Fatty foods and heavy meals should be avoided,” Dr. Khulod said “patients usually complain of fatigue after having such meals.” However, with such a long list of adjustments to implement in their lives, can patients be fully entrusted to carry out all these adjustments, without followup or supervision? “Those who are convinced and aware of the importance of these adjustments are the ones that usually comply,” says Dr. Khulod “surprisingly, patients who comply are very happy. They usually report back to us saying that they feel much healthier.” Still, Dr. Khulod believes that there is a lack of education regarding lifestyle adjustments in multiple sclerosis among health care providers. “We are improving our control over the medical aspects, but apart from that, further education is needed,” She said. The lack of information among the patients was evident in the event, one glaring example could be seen in a survey conducted by the organizers, in which some patients said that they acquired multiple sclerosis as a result of an “evil eye”, a common belief stating that envious looks can cause disastrous results. As for the treatment of multiple sclerosis, Dr. Hussa Al-Otaibia, a consultant in KKNGH and a participant in the event said that almost all drugs used in the treatment of the disease show very mild and controllable side effects. Dr. Al-Otaibi spoke of several ongoing researches that investigate the possible use of stem cell techniques in the treatment of the disease. “The main problem seen in trials is that the immune system tends to attack own-cells when stem cell techniques are used,” Dr Al-Otaibi said, “but the research is still in progress, no one knows what it might lead to.” Dr. Ahmed Abu-Laban, also a participant and a KKNGH consultant emphasized the importance of physical therapy and rehabilitation in the treatment of multiple sclerosis. “Although it might not solve the main problem, rehabilitation can improve the life quality of patients to a great extent.” __
