Charcot-Marie-Tooth Disease Support Group

If you live with CMT, you know the trials we have to deal with on a daily basis. But you also know that we are strong, and that we will endure and triumph; that there’s hope for finding a cure.

you know i was reading a article today about pple with CMT MD and it was right like all the wya no lie it was ppl tlaking about their diffrent situations whit CMT...


ok wlel let me first off by saying that everyone with CMT is diffrent has difrrent situations with it becuase their type and even someone with the same type doesn not mean they have the same problems for ex me and my sister exact same type diffrent problems...so for ppl who think that jsut beucase 1 person has cmt and they have certain problems all of us have the exact same problem credit our problems resemble one another...


secondly...jsut becuase their not working their hardest on finding a cure for CMT does not mean it's not important becuase it is but their jsut doing it at a slower rate...yes us all with CMT isht hey could do it faster becuase our's is progressive but it is what it is and we all believe tha tone day they will have a cure for it and no one will ever have to go trough it...not only CMT but all MUSCULAR DYSTROPHY'S...


you know we go every dya every year working our asses off becuase it's what we need to do to continue what little muscle or what muscle we do have left. you know and ppl dont understand they shit we have to do jsut to beable to continue wlaking....and haveing CMT and knowing alot of people with it they know wha tim talking about...


for all of those people who ge tpissed off when we say were scared hsitless to go into a wheelchair and some of oyu get amd becuase your already inn a wheel chair trust me i feel your pain i know what it's like iw hent through my dad being in one before he passed away and i see my bestfriend go through it and iff i could i would take my own life jsut for them to be able to walk and take away their agnony...but you guys also have to give it a minute and understand where we are comeing form you guys have ahd someone d sutff for oyu all oyur life and change you and all that stuff but us having CMT we never had that we have our independence where we can wlak we cna change ourselves we dont have ot have soemone put us inn bed but it's all a transition for us of course were going to be scared shitless becuase were independendt, also you guys never got the chance to wlak so you dont know what oyur missing and those of us who have been wlaking our whole lives we know what we will be missing so it iwll be harder for us...


AND FOR EVEYRONE WHO HAS CMT MD dont ever let anyone or anything get oyu down live oyur life to the fullest liive the life we have to walk to the fullest..dont ever be afraid of anyhting....and keep working oyur ass to keep the muscle oyu have left and to keep you on your feet becuase the longer we keep our muscle the longer we stay on our feet and it's tradgeic to see someone to go into a wheel chiar with this type becuase it means their disabilty has totally taken over them and their loosing their battle...so keep doing what your doing i believe inn you and everyone else with CMT does to because we know the pain oyu go through on a daily baises with this type especiallty and dont bother what other people sya beucase they dont know what our md does to us they dont know the pain we go through they dont know it effects us...and for htose of you who do have ot have surgeries like myself dont be afraid you will pull them everyone will becuase were stronger than that inn reality were stronger than people think we are..



and for those of oyu whoa re plain rude...it's ok be that way ebcuase you guys will burn inn hell later on inn life..ya were diffrent so wut get over it it jsut emans god has adiffrent plan for us on this earth...and dont make fun of us becuase you guys dont know half of the shit we have ot go thorugh you guys dont know the emoitonal and physical pain...soo until you get diagnosed with this or something else where you have to keep your health up just to stay alive and u have to keep whtat muscle u have SHUT THE FUCK UP!!!


AND everyone asks me why all of a sudden m i not worrieng about alot off stuff becuase it's sad but tru it took me 10 years to relise that i have the life i have and iff i didnt have what i have i wouldnt have meet all my friends from camp that are my tru bestfriends TO ALL MY CMAP FAMILY THANK YOU GUYS FOR BEING THEIR SINCE I GOT DIAGNOSED YOU GUYS ARE MY FAMILY FOR LIFE I LVOE OYU GUYS WITHOUT U I WOULD HAVE GAVE UP YEARS AGO



AND TO EVERYONE WITH MUSUCLAR DYSTROPHY NOT JSUT CMT BUT EVERYTHING!!!! GOOD LUCK WITH YOUR BATTLE AND NEVER GIV EUP GIVE IT EVERYTHING U GOT TILL IT TAKES OVER AND U HAVE NO POWER OVER IT ANYMORE
Posted on 07/21/09, 10:07 pm