Everyone has a different narrative. Some realized early on they are different from the rest of the kids, running and writing in class came with many difficulties, but never understood why. Some were lucky to live long years with no symptoms, raised a family and developed a successful career. Only later they experienced difficulties in walking, deteriorating quickly.
No matter how the patient’s journey began, the disease leads to continuous searching, fear and despair. Years of wandering from one physician to another, numerous medical exams, only to realize the medical field is lacking knowledge and is quite helpless in these cases. During this period the physical condition is constantly worsening: Leg and hand functioning, weakened sensation, with no one who could determine how far it would reach.
Only after prolonged searching, the long-awaited, correct diagnosis finally arrived: Charcot-Marie-Tooth Disease, and in short – CMT. It is a genetic neurological progressive disease inducing peripheral neurologic system disruption, therefore causing a loss of function of the feet, upper legs, hands and arms.
CMT Types – the disease subdivides into over 100 different types, and the extent of severity varies from one person to another. Many parents find out they are ill during pregnancy while undergoing an amniocentesis examination. In fact, it could happen to anyone – statistics are 1 out of 2,500, a much higher probability than ALS, for instance.
We act in different paths to provide patients and family members accessible assistance in different fields, and the ability to significantly improve their quality of life:
support groups and professional assistance
meetings, conventions and online lectures
for the repair of arm and leg distortions
sports practice with professional guidance, occupational therapy, physiotherapy, hydrotherapy, etc
The CMT Association was established in 2018 by persons suffering from the disease; patients and their family members. Indeed, we are still new, resources are still limited, and we are all volunteers, though… we are charged with energy, goodwill and belief that together with your assistance, we will successfully cope with the disease and eventually defeat it.
In our vision, we see a world with no CMT:
Raise – awareness of the disease among the public and the medical community
Form – a supportive and sharing community of CMT patients and family members
Encourage – research concerning medicine and future treatments
We, at CMT strive to improve the lives of people who suffer by offering support, knowledge and assistance. However, we just can’t achieve our goals alone. We will be happy for your assistance in executing our 2020 projects