HNF started the Inspire Charcot-Marie-Tooth (CMT) online discussion Community to connect patients, families, friends and caregivers for support and inspiration. The community connects you with others who share your concerns related to diagnosis, managing symptoms, and treatment options such as bracing, orthotics, and exercise. Most of all, you will find comfort that you’re not alone.
Amanda Pool—a new member of the Inspire CMT Community—recently shared with us her experience of why the Inspire Community is such a wonderful resource for people with CMT.
Let’s hear more from Amanda:
Q: Tell us about yourself: Where do you live? What are your favorite hobbies?
A: I live in Stillwater, Oklahoma. I love to spend time reading, collecting vinyl, and cooking. I recently signed up to lead my son’s Cub Scout den!
Q: How did you hear about the Inspire CMT Community?
A: I first came across Inspire on Twitter, and I immediately created an account.
Q: How has the Inspire CMT Community helped you with your CMT questions?
A: The Inspire CMT Community had answers to questions that I didn’t even know I had!
Q: What have been the most helpful tips shared in the community?
A: I’m grateful for all the knowledge shared within the Inspire Community. I never have to look too hard to discover helpful tips on diet and exercise, strategies for combating fatigue, or ingenious ways to handle other challenging symptoms of CMT.
Q: What would you like to tell others in the CMT community about joining this online support group?
A: I highly recommend it! The Inspire CMT Community has connected me with my fellow tribe while providing a safe environment for member interaction. There is nothing quite like the empowerment that comes from being a member of this online support community.
Q: What else would you like to see in our Inspire CMT community?
A: I think it’s pretty great, and I have no suggestions at this time.
I was diagnosed with CMT years ago and developed symptoms shortly after. I am very interested in any suggestions one might have for exercise to increase my strength and mobility. I am very interested in the latest clinical trials, of which I tried to get into and couldn’t. I know there is hope, would love to share any thoughts the CMT group might have.