If you’re reading this and you’re already in your late 20’s or early 30’s (or older) and you have:
• Charcot-Marie-Tooth disease
• Hereditary Neuropathy with Liability to Pressure Palsies (HNPP)
• Dejerine-Sottas Disease (DSD)
• Hereditary Motor Neuropathy (HMN)
You were probably diagnosed in your teens or possibly earlier. But if you or someone you know is in their teens (or younger) and they have a combination of the following symptoms:
• Pain in their feet and hands
• Weakness and loss of muscle mass (especially in their calves or lower legs and feet)
• Impaired sweating
• Insensitivity to pain
• Foot deformities such as hammer toes or high arches
• Scoliosis (curvature of the spine)
It might be time to do some genetic testing to determine if they have a form of hereditary neuropathy.
What is Hereditary Neuropathy?
Hereditary neuropathies are inherited disorders that affect the peripheral nervous system, often resulting in peripheral neuropathy. Hereditary neuropathies can affect you in many different ways but they are usually grouped into four different categories:
• Motor and sensory neuropathy – affecting movement and the ability to feel sensations
• Sensory neuropathy – affecting the senses
• Motor neuropathy – affecting the ability to move
• Sensory and autonomic neuropathy – affecting the ability to feel sensation and the autonomic nervous system (the system that controls your ability to sweat, your heart rate, your body’s ability to regulate your blood pressure, your digestion, etc.)
As the names imply, they are classified based on exactly which nerves are affected and which functions are impaired.
The most common form of hereditary neuropathy is Charcot-Marie-Tooth disease (a motor and sensory neuropathy) affecting 1 out of every 2500 people. Most people with CMT are diagnosed before they reach their 20’s but their symptoms can begin years earlier. CMT may take a while to diagnose because the symptoms can wax and wane over a period of years.
How Can I Find Out if I Have Hereditary Neuropathy?
The only way to diagnose hereditary neuropathy is through blood tests for genetic testing, nerve conduction studies and nerve biopsies. If you’ve been diagnosed without going through any of these tests, you probably don’t have a good diagnosis.
Your doctor should take a very thorough history and physical. In order to really determine if you are at risk for hereditary neuropathy, you need to look as far back as three generations. However, a word to the wise, even if you hereditary neuropathy has not shown up in your family previously, all inherited diseases have to start somewhere. You could just be the person starting it in your family. That makes genetic testing even more important.
Are Hereditary Neuropathies Curable?
There are no cures for the various types of hereditary neuropathies. Treatment is usually to treat the symptoms and give your body the support it needs to function as normally as possible. That usually means physical and occupational therapy, as well as
• Care and correction for your muscular and skeletal systems
• Treatment for any other underlying medical problems
• Nutrition education and diet planning
• A step by step exercise regimen
• Medication as needed or necessary
A highly skilled medical professional well versed in diagnosing and treating nerve damage is your best place to start for treatment of your Hereditary Neuropathy. An excellent place to start is with a NeuropathyDr® clinician. They have had great success in treating patients with hereditary neuropathy in all its various forms.
If you have a confirmed diagnosis of Hereditary Neuropathy or think you may have it, seek treatment now. While you can’t be cured, you can take steps to treat and lessen your symptoms and greatly improve your quality of life.
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