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Fabiana Pérez Montañés
Country: Uruguay
Age: 33
Profession: Assistant Professor in Imunohistochemistry, Cytology and Biochemistry, Faculty of Veterinary Sciences
Year of diagnosis: 2003
Type of MS: Relapse remitting
I was born in Montevideo, Uruguay, on 6 November 1974. I was born into a loving family: my parents and my sister ground me and are often my reason to live and to keep on fighting.
I had had problems with my health since childhood but in spite of this I led a very active life (sports, work, studying). That all changed on 24 May 2003, when, after several days of severe migraines, I experienced a loss of strength in the left-hand side of my body. I was admitted to a health centre where they spoke to me about inflammation; it wasn’t until the day I was discharged that I saw, for the first time, the words “…probably MS” written on a piece of paper.
My lack of awareness about the disease meant that I didn’t realise the impact that MS was going to have on my life and on the lives of those around me. In the following months, after ruling out other diseases, I received the definitive diagnosis of MS. My neurologist explained the disease to me and wrote me a prescription for a certain medication that in my country – and in many others – is very expensive.
I spent months and months constantly writing letters to different organisations, including the Uruguayan Public Health Ministry – which acts like a disciplinary body for health issues - because my social security would not cover the cost of the medication.
This led me to study the disease further. My objective was to spread awareness about MS through the press, media and even in parliament. I aimed to publicise the existing protocols, establish who was entitled to receive this medication and, in particular, establish recognition for the indisputable right of people clinically diagnosed with MS to receive this medication.
Later I embarked on the legal route and months of arduous, trying legal battles ensued, tiring me out and causing me psychological and physical stress. I was not only fighting for the right to receive my medication, but for all those people with MS with the same social security status and people affected by conditions unrelated to MS who were also prescribed expensive medication.
Eventually, I won these legal battles. Patients were guaranteed their medication for life or for as long as it was effective. In my case, after a year of taking the medication the treatment no longer worked for me. I am now trying another form of therapy and I won’t give up. No doubt there will be another important struggle ahead, but I am not worried, as I am pleased to have made a change at the judicial level for other patients, on that was without any precedent in Uruguay.
From my research I found out about and contacted EMUR (MS Uruguay) who initially provided me with information about the disease. EMUR is a non-profit civil association established in 2002 and contributes to research into MS and related diseases. I work for EMUR as Health Coordinator, circulating and disseminating information, and orienting and helping, to the best of my ability, people with MS and their families.
 EMUR provides what we consider to be essential; education about the disease and how to best manage it. I produced the first information leaflet about MS, which was a complete success, since our country has the highest incidence of MS in Latin America and developed my association’s webpage. Although it is still basic, the page contains important, relevant content.
My role has allowed me to develop relationships with national and international bodies with whom we share the same concerns, hence my link to MSIF, amongst others, and with people from associations throughout Latin America.
The idea to form ULASEM (the Latin America MS Association) came from these links; all the Latin American associations grouped together to promote collaborative working with the aim of improving the quality of life for people affected by MS. ULASEM was formed on 1 July 2006, and I am delighted to be the Vice President. Our next project is the launch of a magazine specifically designed for a Latin American audience.
I am involved with all the issues I am interested in, for example, MSIF’s Campaign for the Ratification of the Convention on the Rights of Persons with Disabilities.
In conclusion, my other dream is to finish my studies in medicine, a passion in my life that I hope to take up again. I will continue with the commitments that I have taken on and which have given me so much happiness throughout so many difficult times. Above all, I will continue my daily fight, using my strength, with joy in my soul and the unconditional love of my family who I love with all my heart, and with the love of so many people 'friends from along the way', one which I embarked upon without knowing it, some years ago.
And friends, never forget that everything we experience in life makes its mark: the joys, the sadness, the laughter, the tears, the pain, absolutely everything leaves its imprint and makes us who we are today, so lead an honourable life and leave a memory for posterity.
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