Friday October 6th, 2017

The International Gaucher Day (1^st October) is marked in over 40 countries where organisations, members of the European Gaucher Alliance, organize different activities for the patients, families, doctors, researches….In Macedonia, the Citizens’ association for Rare Diseases LIFE WITH CHALLENGES…..

Over 10 patients in Macedonia suffer from Gaucher Disease. The disease is manifested in three types, but in Macedonia only Type 1 is present. This type of the disease is manifested with enlarged spleen and liver, bones easily prone to fractures, low platelets count and low hemoglobin, lack of energy, etc. Until 2015 5 patients received treatment through donation via a humanitarian programme of the company Genzyme Sanofee Aventis and one through the programme for rare diseases of the Ministry of Health. Since 2015 enzyme replacement therapy is available for all patients provided by the Programme for Rare Diseases of the Ministry of Health. This therapy is present worldwide since 1991. With this therapy all the symptoms that have occurred in the course of the years decrease and even diminish and  patients themselves can have normal life.

As a Gaucher patient I am thankful for the advancement regarding the patient treatment of Gaucher Disease in Macedonia. Since my diagnosis 23 years ago until today I am happy that all newly diagnosed patients with this disease do not have to fear for their future, on the contrary, with the right diagnosis they will have the opportunity to receive timely treatment which is a gold standard in the world and with this they have the opportunity for a normal life without feeling the symptoms of the disease in the long term. I do hope that all the rare disease patients in Macedonia will have the same opportunity to lead a normal life in Macedonia. With the therapy we can have a family, we can work and we can contribute like any other citizen of R.Macedonia– Vesna Aleksovska, President of Life With Challenges.

Although quite different among themselves, people suffering from rare diseases and their families have equal difficulties that stem precisely from the rarity of their disease. The problems are numerous, from setting the final diagnosis and access to proper treatment to social exclusion and life on the margins of society.

Despite everything, strength, optimism and the belief in better tomorrow are the main “weapon” of the patients and their families in the fight for a long life of good quality. It is up to us to give them hand and ease their journey…

The citizens’ association LIFE WITH CHALLENGES from Bitola in cooperation with Macedonian Post  promoted a post-stamp titled Children with Rare Diseases on 4^th October at MASA.

Loran Kufalo is the author of the post stamp with nominal value of 48 denars, which has been published in print of 6000 copies.

Statement by Vesna Aleksovska, President of the Association:

To live with a rare disease means to live with a friend, not with a foe. Simply we get to know the rare disease and learn how to live best with it. We face many challenges, starting with the diagnosis, then the search for information, medicines, health and social services. The reality is that it is necessary for all the institutions to work together with the associations in order to have advancement. Together we are stronger and we can do more. When we have help we can work and have families, we can lead a normal life as everybody else who does not face a rare disease. We deserve to be part of the society and make our contribution.

The post-stamp is the first in the world dedicated to rare diseases and we are proud that our member Gordana Loleska, employed at Macedonian Post, has initiated this process and Macedonian Post has realized it as such. With this initiative we want to raise the public awareness about rare diseases and the challenges that families face.

Statemen, Iva Petrevska, patient with rare disease Epidermolisis Bulosa

I wish that they invented a therapy for all rare diseases, for some there is, for others there isn’t. For me there isn’t, but I can live without therapy. I’ve got my mum and dad who are always here with me. A big thank you to Macedonian Post who have thought of us, the children with rare diseases.

Statement, General Manager of Macedonian Post Office, Fadis Rexhepi:

All the institutions in Macedonia, all the greater companies should make everything possible to improve the life of families facing a rare disease. We should help raising the awareness for these diseases in Macedonia. This post stamp dedicated to the Children with Rare Diseases is but a small gesture that we could offer, let’s hope that we’ll be able to do much more.