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Finding Support for Hereditary Neuropathy

By Trish Hughes Kreis

 

Hereditary neuropathy is a group of disorders affecting the peripheral nervous system (sensory and/or motor functions) and is passed down through families.  There are hereditary neuropathic disorders affecting only the sensory functions or only the motor functions but there are also hereditary neuropathic disorders affecting both sensory and motor functions.  The most common hereditary neuropathy, which affects both sensory and motor functions, is Charcot-Marie-Tooth (CMT), named after the three doctors who discovered it.

CMT can be recognized as early as birth but actually can be diagnosed at any age.  Clumsiness, weak leg muscles and fatigue are early warning symptoms.  More common symptoms include numbness and tingling of the feet, “hammer toes,” a high arched foot as well as a high stepping gait.  CMT closely resembles other neuropathic disorders so a doctor may use several tests (such as an EMG or genetic test) as well as family history to make an accurate diagnosis. 

Many times the disorder is first seen in the teenage years.  This can be a difficult disorder for anyone to live with but teenagers are notorious for not wanting to be different.  Toss in leg braces, clumsiness or even surgery and even the most easy-going teenager can turn depressed and surly.  Family caregivers may not know where to turn for help but should start with their medical professional for treatment options of the physical symptoms as well as the possible depression.

Although there is no cure for CMT the symptoms can be managed through a combination of therapies including pain management medications, physical and occupational therapies.  In addition, alternative therapies such as acupuncture, biofeedback or meditation can provide help and relief of some symptoms associated with CMT.  Physical therapy, in particular, is extremely important in order to maintain the use of the leg muscles as much as possible.  A physical therapist can design exercise programs to fit the individual’s needs and address the specific areas of muscle weakness the person living with CMT is experiencing.

CMT is known as a slow moving disorder which does not shorten a person’s life span.  For many people, symptoms are mild although more severe cases may require the person living with CMT to use leg braces or a wheelchair for assistance with mobility.  Surgery is sometimes an option in order to correct the foot or joint deformity. 

Hereditary Neuropathy may not have been a disorder the newly diagnosed person has been familiar with or it may have been a part of the family for generations.  In either situation, education and reaching out for support will help not only the person living with CMT but also their families.

 

Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who coordinates the care of her disabled youngest brother, Robert.  She advocates on behalf of Robert in order to keep him as healthy and happy as possible and has managed to persistently navigate the maze of social services and government programs available to help him.  Most importantly, she keeps Robert in a steady supply of Word Search books and 7-Up and entertains him by being on the losing end of many card games.  She can be contacted at robertssister@att.net or through her blog www.robertssister.com.

 

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