Online Events Held as Part of the "My MS Journey" Project

Highlighting that the Multiple Sclerosis Day events were held online this year due to the COVID-19 pandemic, Turkey Multiple Sclerosis Association Board Chairman Specialist Dr. Melih Tütüncü said, "Through online events organized under the 'My MS Journey' project, we wanted our patients to know that we stood by them during these difficult times. "Our aim is to provide information about recent developments related to MS disease and raise awareness in society about the difficulties patients experience," he stated. Turkey MS Association Board Member and Project Manager Specialist Dr. Serkan Demir explained MS disease diagnosis and treatment methods. Multiple Sclerosis, popularly known as MS disease, was brought to the agenda on 30 May World MS Day through online events and live broadcasts held under the "My MS Journey" project in cooperation between the Turkey Multiple Sclerosis (MS) Association and Merck Turkey. The events, organized to draw attention to the difficult journey of patients and raise public awareness, took place on online platforms due to the COVID-19 pandemic. Turkey Multiple Sclerosis Association Board Chairman Specialist Dr. Melih Tütüncü, noting that MS disease, which affects 3.5 million people worldwide and 75,000 people in Turkey, was brought to the agenda on 30 May World MS Day through online events, said, "As the Turkey Multiple Sclerosis (MS) Association, this year we implemented a project called 'My MS Journey' in cooperation with Merck Turkey. Through this project, we aimed to boost patient morale through online events and live broadcasts while also raising awareness by informing society. The events, moved online due to the COVID-19 pandemic, were broadcast live from the Turkey MS Association's Facebook and Instagram accounts. In the event program, singer Ceylan Ertem boosted patient morale with her songs, while chef Semen Öner provided information about diet and meal alternatives suitable for MS patients. In a discussion conducted by Fitness Trainer Gizem Çerçioğlu with subject matter experts, daily mobility for MS patients and sports for healthy living were discussed. These activities took place on 28-29 and 30 May, moderated by valued physicians who are members of the Turkey MS Association. MS patients also participated in the broadcasts and shared their own MS journeys," he said.

"We reached more people through online events"

Chairman Melih Tütüncü, noting that the latest information from the diagnosis phase of the disease to current developments in treatment was shared through these live broadcasts, said, "With new products put into medical use in the world and in our country for MS treatment, we conveyed the message that our hand is now stronger. We said there is no room for despair or groundless pessimism. As the Turkey MS Association, we are pleased that through this project we have reached people from all segments of society as well as MS patients and their families, thereby increasing awareness."

MS is not a genetic disease

Turkey Multiple Sclerosis Association Board Chairman Specialist Dr. Melih Tütüncü, drawing attention to the fact that the cause of the disease is not fully known, said, "Research has listed vitamin D deficiency, previously contracted viral infections, environmental factors, dietary habits and geographic factors as potential causes of the disease, but there is no net proven result. In addition, it can be said that in people with genetic predisposition, all of these theories interact together and the body's immune system is activated negatively. MS is not a genetic disease. The probability of MS appearing in children of parents with MS may be slightly higher."

Watch for double vision, balance disorder, numbness!

Specialist Dr. Melih Tütüncü, noting that the first symptoms of the disease appear within a few days, provided the following information about symptoms: "The disease has many symptoms and can show very large variations from patient to patient. Symptoms also vary depending on the affected nervous system area. In MS disease, one or several symptoms may appear at the same time. What matters is that these symptoms last longer than 24 hours. Tingling, numbness, fatigue, balance disorder, double vision, vision loss, speech impairment, tremor, stiffness in arms and legs, weakness, urinary incontinence or inability, sexual dysfunction can be counted among these symptoms. In advanced stages of the disease, forgetfulness, inability to walk, and swallowing difficulties are also observed. One or several of the symptoms described can be encountered together. These symptoms follow a course of flare-ups and remissions. While showing complete remission in the initial stages, in a small number of patients deterioration can occur from the beginning without remissions."

Twice as common in women

Tütüncü, pointing out that MS is common in individuals aged 20-40 and rare in individuals under 15 and over 50, emphasized that MS is twice as common in women. He drew attention to the fact that MS is generally more common in young people and women, the white race, communities with high socio-economic levels, and northern countries.

False information negatively affects patients

Specialist Dr. Melih Tütüncü, noting that there are commonly believed misconceptions about MS as with many diseases, stated that these false beliefs negatively affect patients and their families. Tütüncü listed the commonly believed misconceptions as follows: "There is a belief that these patients cannot have children. This is completely wrong; people with MS can have children. They should definitely plan the timing of pregnancy with their doctor. There is a claim that lumbar puncture causes infertility or leaves paralysis. This procedure is the same as spinal anesthesia used in cesarean sections. There is a claim that MS is contagious; this is not true. MS is not contagious. Stress is cited as a cause, but stress is already part of life. A stress-free life is not possible; we do not want our patients to change their lives. We tell our patients 'pursue whatever your goal in life is.' It is said that one should not go out in the sun, but this is also not correct. On the contrary, they need to get vitamin D. Here, one needs to distinguish between sun and heat. Heat in MS patients can sometimes cause pseudo-relapses to be felt again. We tell patients to get sun exposure but be mindful of duration. Herbal and alternative treatments are recommended. You cannot overcome MS through diet. The claim that various plants help is not true. We recommend healthy eating, that is, Mediterranean diet eating style, which applies to everyone. We recommend a low-salt diet. Salt can trigger inflammation. You will not consume excessively sweet foods; you will monitor your weight. You should avoid smoking. If a patient is going to have a relapse, smoking moves it forward by 50 percent. It reduces the effectiveness of treatments used in MS and can cause it to progress poorly."

We control the disease 80-90 percent

Turkey MS Association Board Member and Project Manager Specialist Dr. Serkan Demir explained diagnosis and treatment methods: "MS is a disease specific to each person and requires personalized treatments. Our aim is for the patient to continue their daily life, but the roadmap we draw for each patient is very different. MS is a disease whose effects can be reduced and controlled today compared to the past through advanced treatment methods. Today we can control the disease 80-90 percent. Especially after the 1990s, modern methods and new treatments entered MS treatment. Now there is always something we can do for each patient."

Treatment method is chosen based on the patient

Neurology Specialist Dr. Serkan Demir, noting that a detailed neurological examination needs to be performed, said, "Through Magnetic Resonance Imaging (MRI), the current status of plaques formed in MS disease is investigated. MRI is the imaging method with the highest sensitivity for brain and spinal cord imaging. Tests called 'evoked potentials,' which measure the response of the central nervous system to a specific stimulus, are also applied." Neurology Specialist Dr. Serkan Demir, noting that the treatment process is important after MS diagnosis is confirmed, stated, "In the treatment process, patient-specific treatment methods are applied. These are divided into three types: attack treatment, protective treatments, and symptomatic treatments. While many of our patients are kept under control with first-line treatments, for our patients who do not respond or experience tolerance problems, we can either move to second-line treatments or switch to other treatments of similar effectiveness used differently." Neurology Specialist Dr. Serkan Demir, noting that good follow-up of the disease treatment process will also improve the quality of life for MS patients, said, "These patients can live a normal life if they do not neglect their treatments. They can achieve all their goals and purposes in life; they can marry and have children." Demir continued: "As physicians, our primary aim is to improve the quality of life for our patients. Additionally, to support them in continuing their current lives."