06/10/2026
⁉️So…. What is CMT-2Q ❓⁉️
💓It is callled Charcot Marie Tooth Disease which is a “common rare disease” what is uncommon is - I have the 2Q Variant. (Very very rare) now despite the name it has nothing to do with teeth. 💓
According to the doctors at the Mayo Clinic and Genetics,
“ There is not enough information on your variant for us to give you an educated answer as to how to proceed forward.”
Currently , only two written articles out of China they said… So the health care field is useless for us … (let’s just push them to the side )
💥💨🥊 … THATS WHERE I NOW STEP IN…. 💥💨🥊
🌸What’s is CMT2Q for me ❓
💕🩷… for ONE- it’s a neurological progressive disease … meaning there’s no cure and only gets worse overtime. Big breath … for most if not all of us we’ve lived with this our whole lives not knowing…. This is GENETIC after all. We were the kids always asking for help tying the shoes ,zipping a jacket, or were just “a little behind their peers”, the adults still having severe “growing pains (even now that were “done growing”), the adults and kids working on our “r” or “s” in speech therapy but yet we were always strong , clumsy , competitive with ourselves and frustrated ❗️
Maybe it’s all part of evolution making full circle . Who knows ❓👀❓
For TWO - CMT2Q is a FULL body (face,scalp and feet included ) peripheral neuropathy that overcomes your body leaving you unable to feel touch, be constantly numb and cold,have weak muscles and coordination with no sense of where I am relative to space - the nerves the control muscles and carry out sensations don’t work properly…. 💕🩷
⭐️❣️⭐️ ….I am wheelchair bound because of this as it damages the nerve myelin sheath. Meaning the protective cover that surrounds your nerves … leaving them exposed in my muscle. ⭐️❣️⭐️ Because of that, it’s too painful for my muscles to move with the nerve exposed. Therefore, that part of my body becomes immobile leading to muscle loss, inability to feel damage to lower extremities, stiffness & severe pain. This alone can lead to contractures ,broken bones, further issues and even surgeries. ⭐️❣️⭐️
🤟🏽I also have Xia Gibbs Syndrome as another one of the “uneducated answers “ from Genetics however there’s 400 of us worldwide and it’s a direct link to autism spectrum, ADHD disorders and anxiety disorders. Genetics whew …
However this syndrome will be mentioned here and there as it’s still being studied 🤟🏽
💚💚I currently am wheelchair bound,deaf and legally blind but working hard with a strong Neuro Rehabilitation Team to walk again even though multiple doctors said I never would. 💚💚
🤟🏽👀👂Loss of hearing,sight and speech are damaged nerves physically or in the brain …I have auditory neuropathy ( deafness), vocal neuropathy, and visual neuropathy (legally central vision blind)… 🤟🏽👀👂 I also have brain loss starting in my language area of the brain .. GOOD time to start learning sign language,eh ? Been practicing 7 months now. No where close to good but able to get the gist. 🤟🏽👀👂
🤟🏽💜🦄 Everyone’s story is different…. Join me in mine. 💜🤟🏽🦄
🫧🫧LIKE💙FOLLOW💙SHARE💙🫧
LATHER💙RINSE💙REPEAT 🫧🫧
