Hereditary
What is it?
- There are many types of inherited neuropathies, including Charcot-Marie-Tooth Disease
- Often, hereditary neuropathies can lie dormant for years and represent only as mild symptoms until triggered
- Common characteristics of inherited neuropathies:
- Non length-dependent, which means symptoms are felt throughout the body instead of just the hands and feet
- Symptoms develop at a younger age (ex. early twenties)
- Symptoms spread more rapidly
- Family members have similar symptoms
How is it diagnosed?
- Many companies do testing, but it’s important to get approval from doctors and insurance, otherwise costs can skyrocket.
- Invitae does free testing, and GeneDX does a full panel which is free through some insurance companies
- Some insurance companies will require you to get genetic counseling before they approve testing, so make sure you follow up on that otherwise they may charge you and tests can cost $7,000+
- Even if genetic testing comes back clear, you might still have inherited neuropathy — the human genome is not completely understood and much of it remains unexplored
- Research is always finding new genetic markers associated with PN, so ask your doctor if it’s worth getting re-tested (since 2015, over 100 new markers have been discovered)
Articles
If you want to learn more, click on the links below that we used to get our information.
Webinars
Here are some useful webinars and presentations about hereditary neuropathy.
Stories
Read personal stories about people’s experiences with hereditary neuropathy.
- This section is empty for now, but if you come across anything interesting, please let us know!
Podcasts
Here are some useful podcasts we have come across.