Melinda Lang is no ordinary person, and not because she suffers from CMT. She spent 47 years wondering why she always fell over after getting out of bed and walking a few steps and having to crawl to a piece of furniture to haul her frail body up, with weakened muscles.
She also wondered why she tripped over her own feet so often and sprained her ankles plenty of times. The answer to her questions came after 47 years when she was diagnosed with CMT, which sort of explained the reasons for her clumsy nature.
It took a lot of research and determination to urge Melinda to warrant starting her own personal blog, to share both hers and others stories, to make their voice heard and felt across the globe for, as Melinda found out, much to her disappointment, there is still a lot of ignorance surrounding CMT.
Melinda remembers that, even as a young girl, she was constantly struggling to stay on her two feet but was never correctly diagnosed, even though she had visited many doctors and pediatricians. Even a neurologist was unable to properly diagnose her condition and, it was only after her repeated insistence that she undertook a genetic blood test, which confirmed that she had CMT1A, one of the most debilitating forms of CMT.
At the time of her diagnosis, she was working as a pharmacist and struggling to cope with handling pills or doing any menial jobs as her hands continued to weaken over time. Opening jars and bottles proved to be nearly impossible and her constant falling over and fatigue, derived from hours of standing, took their toll on her. After trying out various other jobs requiring less physical exertion, Melinda was forced to retire.
The desire to do something constructive with her life compelled her to volunteer for the American Foundation for Suicide Prevention and Soldiers’ Angels.
In 2010, she set up a support group to help others like her suffering from CMT. Since then, the group have formulated a list of seasoned practitioners with a sound knowledge of CMT, pharmacies and recommended shoe stores. Resources are shared and guest speakers are invited and information regarding innovative or recent research on finding the cure for CMT is shared through the CMTA. Melinda remembers the time a CMTA representative attended one of their meetings and refused to call CMT a disability, saying that anyone suffering from CMT was not disabled.
The fact that most people stricken by the disease refuse to label themselves as disabled means that they have learned to live with their condition and adapt. If they have difficulty opening a jar, they use appropriate accessories and aids, if they cannot walk properly, they use braces. It is easy to feel weakened and different when constant accidents prevent you from doing something deemed normal or casual. Not allowing others to take advantage of this situation is the key to defeating CMT.
We haven’t meet Melinda in person (yet), but we love the title of her blog Living well with Charcot-Marie-Tooth Disorder. Optimism is the first medication for a better quality of life. The post on her homepage is old, but the blog is fully updated on the “What’s New” section. Enjoy!