Emotional & Mental health are not usually the first thing we think of when managing CMT symptoms, but they can have a profound effect on how we process the trials and tribulations of a progessive disease by providing both emotional and physical benefits.
Grief, uncertainty, dependence, pain and isolation can sometimes feel overwhelming and spill into many facets of our lives including, relationships, careers, family, social lives, academics and more.
HNF knows firsthand as patients ourselves, the importance of providing valuable resources and tools for emotional wellness to bring you closer to wellness.
Participate in the Mental Outlook Survey
Dr. Gabrielle Ficchi
What are the key ingredients and practices for raising empowered kids with CMT? Dr. Ficchi is a licensed therapist with specialty areas of focus on individuals with disabilities.
Inspire™ Community Support
In 2009, HNF partnered with Inspire™, a social network for health, to launch a CMT online support community. Our Inspire™ online discussion and support group is so much more than a support group…it’s an environment where it’s okay to open up about personal experiences and share sensitive health information securely.
Follow us on social media to connect
more with the CMT Community!
Other Resources
Charcot Marie Tooth:
- https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Charcot-Marie-Tooth- Disease-Fact-Sheet
Disability and mental health
- https://theconversation.com/adults-with-cerebral-palsy-have-high-rates-of-depression-and- anxiety-new-study-107028
Domestic violence/abuse:
- https://acl.gov/news-and-events/acl-blog/teens-disabilities-have-right-healthy-relationships https://www.thehotline.org/
- https://rootedinrights.org/we-cannot-ignore-the-connection-between-disability-and-intimate-partner- abuse/
- https://ncadv.org/blog/posts/domestic-violence-and-people-with-disabilities https://www.theguardian.com/society/2012/nov/19/domestic-violence-disabled-women-abuse
Mental health apps (for smart phone devices)
Mental health and diet
Screening tool
Recommended reading material
- The Power of Now, Eckhart Tolle
- Mindfulness: Finding Peace in a Frantic World, Anthony M. Williams
Recommended Videos
The Power of Vulnerability, Brene Brown
Phone support
- Suicide phoneline: 1-800-273-8255
- Emotional support: 1-800-932-4616
- Teen line: 717-394-2000
- National Domestic Violence Hotline: 1-800-799-7233
- Amber N. Rieff, MA LMHC NCC, [email protected]
EmBrace It Podcast
Friends and CMT advocates, Lainie Ishbia from Trend-Able.com, and Estela Lugo from the Hereditary Neuropathy Foundation, are real, raw and perfectly imperfect in their informal discussions about the trials and tribulations of living with disabilities.
Both women wear leg braces due to CMT and are passionate about helping others feel confident in their own skin.
Trend-Able Blog
Lainie is a social worker, blogger, & highly regarded speaker with over 25 years of experience empowering adolescents & adults to embrace their imperfections, effectively communicate with others, and live confident & happy lives.
Lainie was born with Charcot-Marie-Tooth Disease, a rare and progressive neuromuscular disorder that primarily affects her hands & feet. She understands first hand the impacts of disability on self-esteem & life satisfaction. As a teenager, Lainie struggled with extremely poor body image & low self-esteem, culminating in a suicide attempt followed months of intensive treatment at an inpatient psychiatric hospital at the age of 16.
Through her workshops, writing, & podcasts, Lainie’s dynamic personality, resourcefulness, humor, & positive energy shines through and is contagious. Whether you’re looking for stylish shoes to fit over leg braces, tips for ‘ discreetly balancing at a party, or hacks for applying makeup with hand weakness, Lainie & her website, Trend-Able, have you covered.
Learn more on this topic
Latest News and Related Blog Posts
CMT Self Care: A 30-Day Journal
CMT Self-Care: A 30-Day Journey to Empowerment and Well-Being Living with Charcot-Marie-Tooth (CMT) disease is a unique challenge—one that demands resilience, strength, and above all, self-care. Introducing "CMT Self-Care: A 30-Day Journal," a thoughtfully crafted...
Charcot-Marie-Tooth Virtual Support Group
The support group offers time to participate in a variety of both educations & open discussion meant to help everyone engage with others on similar journeys.
emBRACE it™ Episode #43
How do we honor the inevitable grief that comes with disability and establish healthy boundaries with those closest to us? Rachelle Friedman, aka “The Brainy Social Worker,” is a disabled therapist who understands that there’s no one-size-fits-all approach to healing....
Real Talk with Joey Nicoletti
Joey’s family has a history of Charcot-Marie-Tooth, and he decided to get tested at the end of 2019. He learned at the age of 23 that he had CMT-1B and needed to adapt his way of life so that he could continue performing.
Setting Healthy Boundaries
Setting healthy boundaries is part of self-care and self-respect. It is being assertive without the need to be aggressive. Healthy boundaries can help us define our uniqueness and our core. Boundaries are not just about getting what we want. It’s about getting to live our lives on our own terms.
Align with Happiness
How do we tap into our joy, peace and best selves during a pandemic?
Healing from the Inside Out – Self Love & CMT
In this webinar, we dive deep into the topic of self-love with Author, Occupational Therapist, and Healing Activator Laura Mayer.
Inner Peace Meditation
Join Alana Kessler for this reflective and healing guided meditation.
How Meditation Can Benefit Charcot-Marie-Tooth Patients
Meditation is an ancient mind and body practice that can offer many benefits for those living with CMT and INs.