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Charcot (shahr-KOH)-Marie-Tooth disease is a group of inherited disorders that cause nerve damage. This damage is mostly in the arms and legs (peripheral nerves). Charcot-Marie-Tooth disease is also called hereditary motor and sensory neuropathy.
Charcot-Marie-Tooth disease results in smaller, weaker muscles. You may also experience loss of sensation and muscle contractions, and difficulty walking. Foot deformities such as hammertoes and high arches also are common. Symptoms usually begin in the feet and legs, but they may eventually affect your hands and arms.
Symptoms of Charcot-Marie-Tooth disease typically appear in adolescence or early adulthood, but may also develop in midlife.
Signs and symptoms of Charcot-Marie-Tooth disease may include:
As Charcot-Marie-Tooth disease progresses, symptoms may spread from the feet and legs to the hands and arms. The severity of symptoms can vary greatly from person to person, even among family members.
With thanks to the Mayo Clinic.
CMT is found on List B within the NDIS, which are Conditions that are likely to result in a permanent impairment. It is listed as ‘Polyneuropathies and other disorders of the peripheral nervous system’
To access the NDIS you will need:
To gain a deeper understanding of what supports you can access with CMT, please do not hesitate to reach out to me. Please book a 20 min FREE consultation with me by clicking on the following link: https://calendly.com/footprintsadvocacy/ndis-20-min-free-consultation
The Footprints Advocacy support packages also include bespoke templates and guideslines to help you through the NDIS process and prepare the right evidience no matter your age.
I have CMT, my son (9 years old) has CMT, my brother, niece and father all have diagnosed CMT. We suspect that my sister also has CMT. When my niece who was only 6 years at the time was being diagnosed, I looked into the NDIS and how it could help her. It was at this time, that I discovered that CMT was on List B.
CMT is a heredity disease which affects our nerves, particularly in our feet and then later in life our hands and arms. With luck, I had been to see my specialised only a few months before and had an updated nerve conduction test (which demonstrated how slow and ineffective my nerves were – particularly in my hands). I also had a blood test which was conducted in 2010 – so I effectively had all of the evidence to support my application into the NDIS.
As I work within this scope I knew the importance of additional evidence to show the degenerative side of my disease as this is one of those ‘invisible’ diseases which people just don’t see or understand.
I wrote a powerful statement of lived experience, added in reports and quotes from my physiotherapists and podiatrist (both of whom I have been seeing regularly for many many years) as well as a full family schedule to show how busy I am, yet supporting how tired I get.
The hard work of collating this evidence paid off and I was accepted into the NDIS and held my first planning meeting. As my LAC didn’t know anything about CMT, other than what she had read from my evidence and what she had investigated herself, I had to spend some time educating her on the impact of the disease. Between my planning meeting with a great LAC and the delegate, I was funded exactly what I requested.
I am extremely grateful to the NDIS for being able to support my disease as I had been paying thousands of dollars per year out of my own pocket, just to be able to continue to be mobile and support my family.
By being an advocate and a participant of the NDIS, I now have even more experience and knowledge to be able to pass onto my clients.
I have CMT, my son (9 years old) has CMT, my brother, niece and father all have diagnosed CMT. We suspect that my sister also has CMT. When my niece who was only 6 years at the time was being diagnosed, I looked into the NDIS and how it could help her. It was at this time, that I discovered that CMT was on List B.
CMT is a heredity disease which affects our nerves, particularly in our feet and then later in life our hands and arms. With luck, I had been to see my specialised only a few months before and had an updated nerve conduction test (which demonstrated how slow and ineffective my nerves were – particularly in my hands). I also had a blood test which was conducted in 2010 – so I effectively had all of the evidence to support my application into the NDIS.
As I work within this scope I knew the importance of additional evidence to show the degenerative side of my disease as this is one of those ‘invisible’ diseases which people just don’t see or understand.
I wrote a powerful statement of lived experience, added in reports and quotes from my physiotherapists and podiatrist (both of whom I have been seeing regularly for many many years) as well as a full family schedule to show how busy I am, yet supporting how tired I get.
The hard work of collating this evidence paid off and I was accepted into the NDIS and held my first planning meeting. As my LAC didn’t know anything about CMT, other than what she had read from my evidence and what she had investigated herself, I had to spend some time educating her on the impact of the disease. Between my planning meeting with a great LAC and the delegate, I was funded exactly what I requested.
I am extremely grateful to the NDIS for being able to support my disease as I had been paying thousands of dollars per year out of my own pocket, just to be able to continue to be mobile and support my family.
By being an advocate and a participant of the NDIS, I now have even more experience and knowledge to be able to pass onto my clients.
Footprints Advocacy is run by our Principal Consultant Kirralee Tapp, who has been supporting families of children with ASD for the past 4 years. Let me help you identify which Footprints Advocacy Package will suit your needs best