I'm 21 and I too have had a mild form of CCD since birth, it would be great to get in contact, I have requested to join that group on facebook , my name is Laura J Jensen on there :)
Look forward to hearing from you!
Laura
Nice to meet you! That's great, I'm a member of that group on facebook, I will let the others know about you! :)
Where do you come from?
Oasis
I'm from Perth in Western Australia :) I would love to meet some people with CCD one day. Have u meet anyone else with CCD in person?
I guess I will chat to you on facebook :)
Laura
oasistai526 wrote:
Hi there, I just got my new account (oasistai526). Please feel free to contact me via msg.
Oasis
Hi Oasis,
I'm 21 and I too have had a mild form of CCD since birth, it would be great to get in contact, I have requested to join that group on facebook , my name is Laura J Jensen on there :)
Look forward to hearing from you!
Laura
hi laura im also from aus and have central core and i have contacted you on facebook
My 10 year old son has been diagnosed with ccd. He can't run, climb or jump very well. Requested to join the fb group. We live in Australia
I live in Conn., USA. My ancestors are from Poland. I am 51 years old and your abilities sound like mine when I was your age. I have had to make adjustments all my life, but it has deepened me as a person and it has deepened my faith.
I am a speech pathologist and work in an elementary school with Hispanic children who have speech and language problems. I worked full time from 1987 - 1994 then went to part time. In 2002 I went on disability but I continue to work 8 hours a week in the same school. I started using a BiPAP to aid breathing at night 18 yrs ago and used a scooter as well. I started using a power wheelchair 3 yrs ago. Despite these major adjustments during the last 25 years, I am very contented with my life. I married a great guy 8 years ago and we are very happy.
I wish you all the best. Just take it one step at a time and keep exercising without fatiguing yourself. I have been in a pool swimming or exercising since I was 6 and am convinced it has really helped me keep my functioning high.
Take care,
MJchief
Hello,
I am so glad to have found this page. My family has about 7 people with this form of myopathy, including myself and my 6 year old son. My son and I have the "mild" form but we have 2 family memebers that are bound to a wheelchair. I have never really met anyone with this outside of my family. I have requested to be a friend as well on fb..Sandra Morales.. I am looking forward in meeting more people with this.
Does this group still exist? I couldn't find it. My son is 9 and has CCD and I'd like to be in touch with others who have it.
Yes of course! It's called "Central Core Disease & Minicore: a place for support, learning & friends".
What's your name on facebook? Perhaps I could ask someone to add you to the group?
Hello Everyone,
my name is Karen. I also have CCD. I have been effected in multiple ways as well and can relate to all of your stories that I have read. I am so happy that everyone is communications because sometimes it feels like you're on an island alone. No one seemed to know that this disease is, how it effects people, it's characteristics, it's prognosis, etc. even the medical community is not sure. If we stick together we can become authorities on our own disease and educate others about it. I am a nurse and would love your comments. Thank you, karen
I am diagnosed with central core myopathy for some years now. I'm 48 now. I'm experiencing lot of backpain and even using a walker is not enough for getting out and about outdoors. I'm thinking of getting a wheelchair. Genetic testing done so far revealed my father has the faulty gene. My three adult children all have the gene, but virtually no symptoms so far. Two others in my family use either a walker or stick. Other siblings tested have the gene but no symptoms. We're told to take the malignant hyperpyrexia under general anaesthetic very seriously. I'm really sorry for your loss if your daughter.