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My little brother is in hospital right now. I am 14 years old and he is only 1 month old. They are performing some test on him to find out what is wrong. I over heard my parents talking in front of his room. They mentioned some central core myopathy, something like that. What is this central core myopathy? Will my little brother be ok? Please, tell me.

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I don't know if I should be saying anything to you. I mean maybe it's a bit premature; I do not want to make you nervous or something. They did not tell you anything about central core myopathy and maybe there is a good reason for that. You said that they are still performing tests, so let's wait day or two, and then you'll know what is really going on. I'll just say you should hope it's not central core myopathy, that's enough for now.
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My brother has central core myopathy. He was one of the first in the United States to be diagnosed with this. They did not know anything about the disease back then and still today their is much research required to find a cure or even procedures to stop the progression. Do not worry my brother is still around today despite what doctors assumed and I myself am continuing medical school in hopes of one day finding a cure.
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I have central core myopathy, it affects me going up stairs and hills and i cannot run or jump... apart from that i walk normally and from what i hear it isnt life threatening. Its genetic but they dont know if i got it from my mums side of the family or my dads.
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Hi, I'm from Poland and I have myopathy central core too. I'm looking for people, who have also this affection. I'm 21. Similarly like you - Laurajjj- I cannot run, jump...etc. I would like to know you better to show how you live with myopathy. Sorry for my bad english :) Bye, Caroline.
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I would like to know you better to "SEE" how you live with myopathy.
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I also have Central Core Disease. I have trouble walking up hills, stairs, and standing up from the floor. I can't run or jump either. I inherited Central Core from my fathers side of the family. I was told my children had a 50-50 chance of inheriting it. I had 4 children and 3 of them inherited it. All used/use wheelchairs, have dislocated hips, and scoliosis. My oldest daughter lost her life to Rhabdomyosarcoma when she was 10yrs old. It's a muscle tumor, and I'm told not related to Central Core Disease.
I would be very interested in hearing from other people and their experiences with the disease.
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Are you taking any medicines? I am only training and taking Coenzyme Q10 etc. Nothing special... Please, answer. Caroline
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My daughter has Central Core Myopathy. She was diagnosed at birth, and she is now 14. She cannot walk at all, she cant take any weight through her legs and she uses a wheelchair. Central Core disease caused her to also have scoliosis (curvature of the spine). She had major spinal surgery in 2004, and now has two metal rods in her back. She is also prone to malignant hypothermia, and has bilateral hip dislocation. She does not suffer any mental illness whatsoever, she is incredibly bright, talented, confident and academic. She is a very happy girl, is very popular with her peers, and although she has to deal with an awful lot in life, she is extremely determined and inspiring to everyone.
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Caroline_PL wrote:

laurajjj wrote:

I have central core myopathy, it affects me going up stairs and hills and i cannot run or jump... apart from that i walk normally and from what i hear it isnt life threatening. Its genetic but they dont know if i got it from my mums side of the family or my dads.




Hi, I'm from Poland and I have myopathy central core too. I'm looking for people, who have also this affection. I'm 21. Similarly like you - Laurajjj- I cannot run, jump...etc. I would like to know you better to show how you live with myopathy. Sorry for my bad english :) Bye, Caroline.




Hi Caroline, it would be nice to get in contact with you, I am 19 and I live in Australia, Ive always wanted to meet someone with Central Core Myopathy as not many people know what it is. You can email me at if you like.

Looking forward to hearing from you :)

Laura




***this post is edited by moderator *** *** private e-mails not allowed **
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Sorry my email was edited out of my last post, anyway just reply on here if you like

Laura
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Hi- I too have CCD, I was just diagnosed at age 48! My ten year old daughter inherited from me. Luckily we seem to have a mild case of it- we can't get up from the floor normally, can't run or jump or walk up stairs with the same strength as most. So it has caused years of embarrassment and anxiety for me but I am hoping that with this diagnsosis I can prevent those emotional scars from my daughter. I have seen mild progression, but we all lose some strength as we get older so it hard for me to tell what is CCD and what is just old age! I am hoping to 'meet' others coping with this and learn as much as I can. I took a blood test for genetic proof of the mutated gene as the muscle biopsy is what gave me my diagnosis. I am hoping that when my child chooses to have children she can screen for this condition. Even though it is not life threatening or affect your intelligence I wouldn't wish it upon anyone. Jeni
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I am 26 and have CCD. I have had it since birth, but a mild form. I cannot do sit-ups, jump, run. Stairs are hard, and I have the 'gower's manuever' when getting up off the floor. I was also told that I have a 'myopathic facies' and that my vocal cords may be affected. I have a slight curvature of the spine. My father, his sisters, and my grandpa all have the disease. The onset for them was late 20s-30s. I have 2 children; my oldest (2yrs) will be tested in September. I suspect she has it. But my youngest (6mos) shows no signs of it. The only reason I am going through with genetic testing is to find out if we are at risk for malignant hyperthermia.

Nice to hear other people's experiences. I've been trying to find a support group specific to CCD...anyone know of one??
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Hi everyone,

I suffer from CCD too, and I'm 22 at the moment. I have got it since birth, can't run, jump, and with difficult climbing stairs (so yea the mild form too). If any of you were on facebook I know some friends of mine who got CCD too and we are in a group called "The Core: CCD friends around the world", please feel free to join us and share our experiences! I would really like to meet as many friends as possible in this area so that I could know as much knowledge about it.

Nice to meet you all!

Best wishes,
Oasis
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Hi there, I just got my new account (oasistai526). Please feel free to contact me via msg.

Oasis
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