“Story of the Week, My Story”

To begin with we shall share a series of weekly stories about patients with rare diseases in Romania and those who care for them: parents, professionals, educators, colleagues, etc..

Starting the first day of February, the National Alliance for Rare Diseases National campaign launches "healthy and sick, Partners for Life", the International Day of rare diseases, officially marked the last day of February.

We think it has to be known by the general public because they are true heroes.

Life with a rare disease or a person living with such a life is a constant battle for surviving. First test gave life and only then told them which lesson was actually ....

Here is one example:

I wanted my daughter to be different and so I named her Melita. Shortly after she was born, she was diagnosed with Epidermolysis bullosa (E.B.), a rare skin disorder which does not have a treatment. Young people with E.B. are called “butterfly children” because their skin is extremely sensitive, like the wings of a butterfly. Also, E.B. is considered terrible disease because unborn children suffer in the mother's womb before they are born; like the butterfly larvae, which struggle alone in the cocoon to escape and enter the world. E.B. prevents children from having a happy childhood and a normal, adult, life. While my family was lucky to receive a quick and direct diagnosis, my daughter’s condition has no treatment. I refuse to accept the lack of treatment for my daughter and continue to search for answers and hope that something can be done. Some glimmers of hope come from the support offered by others suffering from the disease in Romania. Also, finding other patients with rare diseases in Romania helped us to feel that we were not alone. We were able to join the rare disease community that shares our struggles and fights for similar objectives like the inclusion of more orphan drugs in the National Health Strategy by the Romanian Ministry of Health. I hope for more sunny days and a brighter future for my daughter.

More information: http://ziuabolilorrare.wordpress.com/