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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