I experienced many insults in primary and high school nevertheless I persevered to graduate from both. I thought about attending university but realized that there was no accessible university for people like me. My family did not have the financial means to support higher education for me. Against all odds, I won a place in the Economics Department at a university but then found out that I could not ascend the stairs of the building to take the exams.
Muscular dystrophy patients cannot obtain the knowledge to live a more qualified and humane life. Many are poor, cannot read, and are unable to leave their homes. They cannot receive basic medical help or any physical therapy they the would especially need. All these basic needs should be solved effortlessly within a social state but it is not the case in Turkey. Most of these patients are unemployed, although they have made all the effort that was in their power for many years.
Patients who have financial means, however, and have a little bit knowledge try to learn more about their disease, yet they can not get sufficient knowledge. Patients in Turkey need to live as independently as possible and need to get appropriate support and knowledge about neurology, cardiology, physiotherapy, genetics, orthopedics, dietetics, and finally, psychological help.
You may contact Fatma here for the Turkish version of her story.
1. The Neuromuscular Disease Foundation (NDF) has launched a page "Rare Reality" on their website where GNEM patients are encouraged to share their story, here is the link.
2. GNE Myopathy International (GMI) has recently conducted a 2 day conference on the Perspectives on GNE Myopathy, for updates check here. http://gne-myopathy.org/