Vjollca

Hello, my name is Vjollca and I was born on the 18th of December 1967 in Gjirokaster – Albania. Albania consists of twelve regions and Gjirokaster is the southern most part. My profession is as a rheumatologist doctor and I am actually working in the regional hospital of Gjirokastra.

I was found to have MS in May 1984 at the age of 16, with double in vision after going through a bout of influenza. I honestly never ever thought that one-day could or would change my life forever. I didn’t consider myself ill until 1988 when I went through experiencing double vision, by then I was a student of the second year at the Faculty of Medicine in Tirana. Only then did I begin to understand fully the disease which I suffered from, it was called Multiple Sclerosis. I recall that the subject of neurological diseases was done at the fifth years of the faculty and I remember that I was in tears while listening to the lecturer (my personal doctor) who was explaining MS, its prognosis, and I was terrified to learn that there is no cure for it. Furthermore it is not that easy to handle such an illness in a poor country like Albania. As a student of medicine I had an opportunity to meet many patients suffering with MS and I began to understand the disease better and what was going to be my way of life.

The graduation from the Medicine University made me understand that my way of life would be totally different from the other students. My life wouldn’t give me the chances to try its full range of possibilities. MS was now going to follow me for the rest of my life. Also I understood the main reason why my parents persuaded me to study medicine. They were helpless taking care of me so they thought that the education in medicine would give me a better position to take care of myself medically.

Up until five years ago my MS was relapsing-remitting but after that walking became much harder and I thought I was at the secondary progressive form of the illness. I was terrified going up and down the stairs; I needed somebody’s assistance to feel safer. I didn’t know what to do during the days since I’d lost the confidence to walk - did I have to rejoice or did I have to mourn to this day? I’d made my decision– I had to rejoice as the tomorrow it’s never known what will happen.

One day when I was still a medical student at Tirana University, my professor asked me to stay a while after the lecture was over. He asked me if I was having any problem with my eyes as he noticed that I had horizontal nistagmus. Being a bit ashamed I admitted by saying that I suffered from MS. He felt embarrassed and replied: “Do not forget God and miracles can always happen. In these moments that we are speaking the scientists in the world are working hard and no one knows, maybe in the near future there will be cure for MS”.

I always remember those words from my professor who died a few years ago and they give me hope for tomorrow. I hope that you won’t think that I am dreaming when I say that I am sure I will live until cure is found to fight MS.

In my presentation I want to share with you the circumstances in which we live as MS suffers in Albania. Albania is a poor country in the South-Eastern Europe. Surviving from a communist dictatorial rule of 45 years, Albanians live at a time of hard social transition and they are at the moment a long from prosperity.

The occurrence of MS in Albania is 10.3 per 100,000 inhabitants. The average age of starting disease is 28.9 years old and the frequency occurs mainly in Gjirokastra region 21.4/100.000 (MS in Albania, J.Kruja-MS in Europe. An epidemiological update).

In Albania treatment with Interferone Beta-1b became available only in September 2002. (Betaferon, Schering). This medication is prescribed free by Albanian Government to MS suffers and is the only Interferon Beta available in Albania. Treatment with Betaferon is only obtainable from the Tirana University Hospital. This means that relatives and the family’s of suffers have to travel to Tirana once a month, from all over Albania, to obtain the drug. Awareness about and information concerning MS amongst suffers and their families, the society is practically nonexistent. Any support equipment such as crutches, walking sticks and wheelchairs are either bought at great expense by those who can afford them, made by hand, or suffers have to do without them. Social security for suffers of MS who cannot work is at the moment €60 per month.



In November 2001 I was able to form and legalise a National MS Society in Albania by going through the Gjirokastra Law Courts and submitted all the documentation for registration. I would like to emphasize how difficult is to organize and get the MS society off the ground in Albania. I managed to speak and share with some MS patients but all they can do is wait. I don’t know how far I can be understood when I speak about difficulties, how to manage the association when all its members have limited capacities. In my country we cannot speak so easily about our disease, which we suffer from even more because it can disable you. I don’t deny the feeling of shame from the society. It’s painful to have the sense of fear and shame from the society not to mention that what we need from them is help. My hope is fading away that our association is to work out one day. I was surprised when I opened the Internet page www.msif.org especially when I read that MSIF was founded in 1967, whereas in Albania is not yet an MS patients association.

I want to thank the MSIF for the invitation that made it to me so that I could share my life story with you. I would like to say to everyone who reads this presentation of mine and unfortunately is a suffer of MS, you are very lucky in the world of MS patients if you consider us as equal in our suffering. I hope tomorrow will bring a brighter outlook for MS patients in Albania as of course in the rest of MS world and look forward, one day to a world without MS. Thank you very much.

Yours sincerely,
Vjollca

If you would like to contact Vjollca please send your message to info@msif.org and we will pass on your e-mail.