Patients living with Charcot-Marie-Tooth can often feel immense emotional stress of dealing with a chronic and progressive disease. Combined with the physical challenges of this rare disease, CMT patients can feel powerless over their own lives. HNF is set out to change that today!
CMT-Connect™ is HNF’s new patient-focused initiative providing educational workshops aimed at bringing wellness and empowerment to local patients and their families. Our workshops are designed to provide a holistic-educational and patient empowerment approach.
Participants can engage in a safe environment to talk about the emotional dynamics of dealing with a chronic illness. By acknowledging the physical and emotional challenges CMT patients face on a daily basis, we will encourage and empower participants to be proactive advocates for their care, quality of life, and wellness needs.
To help HNF kick off this incredible initiative, we are proud to introduce CMT-Connect™moderator and CMT patient Kristin Gelzins.
Kristin is from Long Island NY, where she lives with her husband and 4 year-old son. Kristin wasn’t diagnosed with CMT until her late twenties, but experienced severe CMT symptoms and underwent bilateral hip replacement in the years prior to her diagnosis.
Even though Kristin uses a wheelchair to get around, that doesn’t stop her from being active. During the warmer months, she enjoys kayaking with her family, going on nature walks, and riding bikes with her son. She loves being outdoors, swimming, and strives to give her son the life she believes he deserves. Having a disability pushes her harder to ensure she can give him the kind of life she’s always envisioned for him.
Let’s learn more about Kristin and what she hopes for CMT-Connect™:
HNF: Where did the inspiration for CMT-Connect™come from?
Kristin: I really wanted to provide people with CMT and their caregivers something different, something to look forward to, and the right tools so they can lead the fullest life possible. I believe we’re doing that and will be providing a service to the CMT community that’s a bit different than the norm by giving everyone the tools and education they need to bring into their daily lives.
HNF: How has your life been affected by CMT?
Kristin: Having CMT myself, it’s always been a struggle to maintain balance in my life: the constant changes with the progression of CMT and my drive to do more for my family and the CMT community. I will be able to bring a unique perspective to the table, not only as a social worker but as a patient who’s been there.
HNF: Can you give our community an idea of the workshop format?
Kristin: The workshops will focus more on a holistic approach; providing support, proper education, and positive coping skills while integrating numerous approaches of exercise and proper nutrition. Everyone will have the opportunity to discuss their feedback in future sessions.
HNF: What are your goals for patients and caregivers through these workshops?
Kristin: I look forward to giving patients new coping skills and tailored activities that can be adapted for all kind of abilities and education/ support for their caregivers.
HNF: What do you see in the future for CMT-Connect™?
Kristin: I look forward to starting in NY and eventually branching out to other states to offer the same kind of approach to patience all over the US.
Want to participate in a HNF CMT-Connect™ workshop in your area?
Visit us at https://www.hnf-cure.org/cmt-connect/ or email at [email protected].
The chronic and progressive nature of this disease bring up a reasonable question as to the full and complete expectations that we as patients should have with regard to the eventuality of symptoms and general health conditions that we should be looking forward to as the disease progresses. I understand the need for developing a positive outlook but I also feel that it is important to develop that positive mindset based on an informed expectation as to where the disease will eventually take the patient. I do not feel that enough information is offered on this subject.
Will this change?
Are there any work shops in Georgia?
Hi Anita,
No as of now, but please keep checking back for updated locations.
Hello, I have a LMNA mutation which causes Limb Girdle Muscular Dystrophy as well as a severe cardiac phenotype. I am now experiencing forearm and hand weakness where it hurts to write. My grip is now very weak. I have calve weakness, but they do not look skinny. I am clumsy. I have longstanding digestive issues as well. I think I have an autosomal dominant form of CMT ( I’ve read that AD CMT has been reported)caused by this same mutation in LMNA. Despite studies I
Furnished to my primary care doctor, I was blown off, because I did not have classic symptoms of a diabetic type peripheral neuropathy. Though I don’t have every symptom of CMT, I am certain this new not mild weakness is
an overlapping phenotype caused by the mutation in LMNA. My doctor is simply wrong. How can I get the right diagnosis?
Hi Mary, thank you for posting. I would suggest you connect with me off-line at [email protected]. HNF was recently awarded a grant funded by NORD and FDA to conduct Natural History Studies on some of the rare forms of CMT to include LMNA. Kim Goodsell, a CMT Patient with LMNA will be speaking at our upcoming Patient-Centered CMT Summit in NYC this fall, 2016.