Although CMT has been around for more than 150 years we still hear stories of people remaining un or being misdiagnosed in the early stages of their life or, tragically throughout most of their adult lives also. Being aware that you have CMT at an early stage is paramount to coming to terms with it and learning to deal with and delay it as much as possible. It is only in the 1970’s that most doctors or neurologists really had a grip on the differing symptoms evident in the many types of CMT in known existence.
Still, many countries around the world do not even have a CMT awareness campaign or a Foundation, which makes pinpointing the disorder that more complicated. For a truly debilitating disease which affects generations in its painful wake, there should definitely be more recognition and assistance for those individuals affected by CMT, whether directly or indirectly. In the US, the State provides for one yearly visit to a neurologist for 10-15 minutes, and that is only if you are insured! Surely there can be more government health organizations can do to decrease the burden of CMT and facilitate the social and physical conditions of those subjected to its mercy.
It is usually the solid and heroic efforts of CMT patients themselves, who take it in their own hands to deliver the empty promises made by politicians prior to elections. If it were not for these icons of strength and resolve, few of us would ever have known what CMT is and what it means to have to live with it on a daily basis. None of us, however, can even contemplate the terrible emotional and physical pain which the majority of CMT sufferers have to bear. Highlighting their stories of courage and willpower could be a start, however!
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