Head of ‘Turkish Cypriot Multiple Skleroz Association’ Sibel Hançerli, in her interview to Ödül Aşık Ülker, from Yenidüzen Newspaper (http://www.yeniduzen.com/Haberler/roportaj/gulumse/71563) gave information about the MS disease, the association and the 1st MS Camp that has been achieved through the first small grants of `Raise Your Voice Advocate Your Rights` project financed by EU and managed by Naci Talat Vakfi and IKME. On this occasion, as J2M team, we would like to share some information with you about the MS disease, the MS Association and the 1st MS camp as a success story based on the interview published in Yeniduzen.
MS Association has established in 1999 by Ercan Saymen with the aim of supporting the MS patients socially and in the terms of rehabilitation. The main objectives of the association are; to give information to patients about daily treatments and drugs and to contribute their social life.
The chairman of the association stated that their biggest deficiency is the lack of an association building and said that they don`t receive the dues from the members of the association because they are not financially in good condition so they are running the association with the donations they are collecting. She also pointed out that physiotherapy is a crucial in MS, but it is very costly, therefore they are also aiming to establish a physiotherapy center for the MS patients.
According to an article (http://www.webmd.com/multiple-sclerosis/guide/what-is-multiple-sclerosis#1) MS (Multiple Sclerosis) disease, happens when your immune system attacks a fatty material called myelin which wraps around your nerve fibers to protect them. Without this outer shell, your nerves become damaged. The damage means your brain can’t send signals through your body correctly. This long-lasting disease can affect your brain, spinal cord, and the optic nerves in your eyes. It can cause problems with vision, balance, muscle control, and other basic body functions. The effects are often different for everyone who has the disease. Some people have mild symptoms and don’t need treatment. Others will have trouble getting around and doing daily tasks. There is some evidence that genetic and environmental factors are causing the disease jointly, although the cause is not fully understood. Although there is no complete medical treatment, the progression of the disease can be managed in large proportions with treatments.
It is known that there are about 300 MS patients in Northern Cyprus. According to the information given by Hançerli, there are 153 members of the association, 69 of whom are MS patients and others are relatives of MS patients. She said that the group that is affected by MS in society is not only the patients but also the patients’ families and relatives. This means that the management board will be able to achieve more if it is formed of families and healthier individuals as far as possible.
Having said that society is experiencing an empathy problem stemming from unconsciousness in this matter, Hançerli stated that there were attempts to make a public spot about MS. Hançerli stated that there is no legal regulation on this matter and she added “Especially patients who are working in a private sector has to hide their illness otherwise there is a risk of losing their business”.
The president of the association explained that, through Prof. Murat Terzi, who came to north Cyprus for a training from Samsun, two members of the association has joined a camp then the idea of having such a camp occurred; the association have participated in a small grant scheme launched by ‘Raise Your Voice Advocate Your Rights’ project funded by the EU, managed by the Naci Talat Foundation and IKME, and they carried out the camp back in October 2016, on a small scale with a small grant they have obtained. Hançerli stated that they have decided to start with 16 patients with EDS score 4-7, because of their difficulty in walking, with high balance problems and more distant from social life, she said “with the attendance of neurologist, physiotherapist, psychologist and dietician, –from sports to education- we had a comprehensive camp. We saw that the patients were very happy both in the social direction and in terms of rehabilitation”. Hançerli stated that they had met with reflexology, an alternative treatment method in the camp and they want to continue with the camps.
Hançerli said: “I want to make a call for MS patients before everything; they should come and become a member of the association without any hesitation. They should claim their association. It would be much easier for us to produce solutions if we work on our problems together. We can make our voice to be heard easily. Sensitive citizens also please do not spare your valuable donations from us”.
Some comments from patients who attended to the 1st MS Camp
Cumhuriye Gemikonaklı – age 56 – has been diagnosed 26 years ago
“I feel lucky for to be able to attend this camp. I spent my birthday with my MS family in the camp instead of my real family. This camp had a positive effect on my life… motivated me to do new things. This should continue, it felt so good to be together and meeting with experts. We have some expectations from public. There is no awareness. Especially in the villages MS is unknown to the most. We need to work together..”
Sevinç Arslansoylu- age 52 – has been diagnosed 21 years ago
“Being in the camp had a good effect on me. Normally I was having hard time to sleep without the TV, I got used to it in during the camp. We had nice chat until late with my friends. My mood has uplifted… I live in Morphou, there are not much places that I can go with my battery operated wheelchair. There is only one big market and one pizza restaurant that I can go. Architectural obstacles are everywhere”
Remziye Mendeli- age 40 – has been diagnosed 16 years ago
“I was very excited on my way to the camp. It was the first camp of my life… Being in the camp had a very good effect on me. I was very bored at home. I met with reflexology, loved it, relaxed me a lot. I was very happy to chat and share some things with friends. I live in Famagusta and going to yoga classes. We did sports every day in the camp. There should be more camps definitely”
Servet Kofalı Ürün- age 43 – has been diagnosed 22 years ago
“I was not nervous at all on my way to the camp, I felt only joy. During the 5 days camp my experiences created a positive impact on me. I met with reflexology, we had sports every day. We had seen experts, doctors. I have experienced a lot more than I was expecting. I wish the continuation of the camp.”