CMT is LIFE THREATENING.
CMT IS A TERMINAL DISEASE.
I am very young in my mid thirties with CMT .
CMT SYMPTOMS AT 15YO,
CMT diagnosed at 18yo,
WHEELCHAIR BOUND AT 19/20yo
PHRENIC NERVE PALSY diagnosed at 28yo in Hospital A&E.
HEART FAILURE (arrhythmia erratic heartbeat) diagnosed at 30yo in Hospital A&E.
I BEEN IN AND OUT THE LAST 5 years of HOSPITAL A&E all due to RESPIRATORY COMPLICATIONS, I am very Slim, skinny in places, I have Bladder & Bowel complications..
All that started mildly then severe and now it’s critical.
There’s So much SECRECY AROUND CMT that it DISTRACTS sufferers from PLANNING LIFE FUTURE HEALTH
I am very happily looked after by the best neurologist team I know, However I believe CMT is so complicated that neurologists themselves are studying & understanding CMT to a level so they can OFFICIALLY DETERMINE IT AS A PROGRESSIVE TERMINAL DISEASE LEADING TO DEATH. Understandingly those confirmations cannot be taken quick with few CMT PATIENTS DYING FROM CMT COMPLICATIONS.
As a SEVERE CMT sufferer I feel Insulted, Ofended, lied to When reading “Official CMT literature” Affirming that CMT “isn’t life threatening, that it has normal life expectancy “, I have been told before by “official in the know sources “ for me not to talk about my CMT as it would Scare fright worry other Cmt’s, Neurologists aren’t miracle workers, they know a lot but don’t don’t yet know EVERYTHING ABOUT CMT, hence the their decision not to mention that CMT IS LIFE THREATENING MANAGED OR NOT WE WILL EASILY GET INFECTIONS WE WILL GET BREATHLESS EASILY FOR NO GOOD REASON WE WILL EXPERIENCE “OTHER” HEALTH PROBLEMS ARISING, but they won’t admit it’s CMT RELATED...
I just came out from A&E AGAIN, my swallowing and voice has WORSEN in the last 6 weeks I had Pneumonia Aspiration, my stomach was DISTORTED MY LEFT PHRENIC NERVE WAS UP PUSHING DIAPHRAGM, MY HEART WAS SO UNDER PRESSURE THEY KEPT GIVING MEDICATION FOR IT IN CRITICAL CARE UNIT, I was put to sleep INTUBED AND IN VENTILATION, my respiratory system and heart was so under pressure from trying to breath I couldn’t cough and get rid of mucus that kept getting in the way and getting stuck in the top of my throat... sure with a pneumonia infection it exacerbated it all... but CMT IS A NEUROLOGICAL condition it AFFECTS NERVES MUSCLES it will WEAK LIFE ESSENTIAL ORGANS it is PROGRESSIVELY DETERIORATING.
Yes I might sound angry upset and even having a rant but knowing that CMT SUFFERERS are being kept in the dark being told that only in the most SEVERE CASES, or being told that those cmt that died they had other complications or others that they were very old... It’s unacceptable unjustified unfair.
I had private emails and messages informing that my experience can’t be allowed to be shared because it will “SCARE CMT SUFFERES”, really!?
By the way.. Anyone with CMT with Hoarseness voice ? Swallowing problems ?
My voice has got so bad that I lose it completely I used to get better in the mornings now is 24/7 it makes my chest and breathing harder to work.. to speak is a huge effort