Living with a rare disease” through Panayiotis’s eyes
On a very special day for him, the youngest UNICEF’s Youth Advocate in Greece, addresses all of us so that we contribute in making our society a better place for all those people who suffer from a rare disease, as well as for their families
My name is Panayiotis Raptis, I’m eleven years old and I’m in the fifth grade of the elementary school.
The 28th of February is a really special day for me as well as for many other people facing the challenges of a rare disease in their lives.
On February 29, 2008 –a very special day for us– it was the first time that the World Rare Disease Day has been celebrated by the European Organisation for Rare Diseases (ΕURORDIS) and since then it’s celebrated on the last day of February.
Did you know that...
- In the European Union countries the percentage of people suffering or will suffer from a rare disease is about 10%, that is over 30 million people;
- It is estimated that in Greece 1 million people suffer or will be affected from a rare disease;
- There are about 8,000 rare conditions or diseases that afflict human beings. Some of these conditions are genetic, some are chronic and some are degenerative while others lead to psychopathic, mobility and mental disabilities or to a combination of those.
- 50% of the conditions display symptoms during childhood, while there is no effective treatment for most of them.
I’m dealing too with one of such conditions. It is called Spinal Muscular Atrophy Type 2. Probably, many of you haven’t even heard about it. My parents and I had to “meet” with it when I was born. And not only did we got to “meet” it, we also learned how to live with it!
It is a disease of the nervous system that, in my case, is caused by the lack of the gene that helps in supporting the muscles and, essentially, it affects my mobility. However, its cause and how it can be explained in scientific terms is of minor importance...
The important thing is that everyone must understand what the daily care and recovery of people suffering from such a condition entails for them and their families.
Living with such a condition –or with any other rare disease– automatically degrades your health and quality of life because, basically, you don’t have the possibility to be independent.
This means that in your daily life you have to live like a “soldier”, in order to maintain as much as you can your already poor physical condition.
You have to attend, in an almost daily basis, physiotherapy and occupational therapy sessions as well as aquatic therapy not to mention all those other things in which you have to invest time, mental energy and, of course, money.
Throughout this journey till today I was lucky because my family stands always by my side. My family had to adjust in a new way of life full of great challenges from psychological and physical point of view.
In this extremely important day for me, I would like to ask everyone to show a bit more awareness and focus more their attention to those people, contributing as much as possible in improving the quality of their lives.
As a society, we should take more actions and find ways to help these people to be integrated and to participate in all aspects of social life.
Even nowadays, people suffering from a rare condition are not included in the labor market despite the fact that they are able to work. The most common reasons for their exclusion by company managers is the lack of necessary knowledge about what these people are able to offer and, also, because of the inadequacy of buildings regarding the accessibility infrastructure for people with mobility disabilities.
For this reason, we should invest in the ability and uniqueness of these people so that they will be able to enjoy equal opportunities and rights with no exclusions, like the right to health, to education, to work... and to success!
Trust me, we have many talents. Offer us the opportunity to reveal them!
Panayiotis is the youngest member of the Youth Advocates Program of UNICEF Greece so far, and through his role he aims to promote actions for the inclusion and integration of people with rare conditions and disabilities in the society.