Last post Thu, Mar 20 2008 9:21 AM by Vinny. 12 replies.
Hey JDub,
Thanks for the welcome. Glad to come here and be a part of the community
David
hi david. happy to have you join us! i hope that you find new friends here.
Hi , I am a fairly new member and I also Have Myotonic Muscular Dystrophy I am 44 Years and my name is Annette My brother and Older sister have it and my father died with it. Didn't start to bother me till I was in High School Didn't even know about it till my Dad was having problems and went to the Doctor and was Diagnosed with it then we got tested for it my other two sisters do not have it I guess it is a 50 50% chance. I to hope that there will be a cure some day or something that will show the desease from getting worse they are making some new strides with Duchenne I saw on the MDA website with mice I live alone my Mom comes over sometimes ot help with things my sister lives right next to me in her apartment my Mom helps her to my bother isn't as bad off as we are he can still get around yet and can drive a car I quess it very from person to person Soime people are on oxygen some need pacemakers just glad I don't need that yet Doctors say my sister who is 45 needs a pacemaker but I don't see why she likes she always been see does have a little heart problems but she acts like she always does she going to get a second opinion.
HI!! I am new to this site. I am 20 years old and my name is Amy! I have mytonic muscular dystrophy and my child has congenital mytonic muscukar dystrophy. I found out after my baby was born. He was born at 32 weeks and imediately sent to the NICU! He was in there for 2 months on all sorts of tubes and medication and soon after surgerys. Being young and having a child is hard enough, but being young and finding out that you and your child have a muscle dystrophy is even harder. I did not know I had this cause I was adopted an my parents probably had NO I idea that they had these genes. So it was quite a shock when finding out. We go through many obsticles every day but I make sure to keep my head up. Sometimes I find it hard to see my child developing slower than other children, but he really is doing well. Sometimes I get a little discourage when I shake someones hand and I can not let go when I want to, or when I am in the middle of a sentence and my jaw locks up on me, or when I can not calm myself to fall asleep. I know if other people out there can do this we can as well!!! As long as you can get up and kick butt so can I.
hello annette and amy, it is nice to meet you. gee, the both of you are going through alot and seem be strong. amy, taking care of a little one with all of the other stuff..my hats off to you. i sure wish they could find a cure for you guys soon and alll of the diseases. and disabilities on here. we can dream and hope right? welcome to disaboom and god bless you and yours.
Hey all,
I am new, too and my dad signed me up here. I have Congenital MMD and I am 13. My mom has it, too. I am in 6th grade and I am home schooled. I have a 15 year old sister but she does not have it. I am looking forward to getting to know some of you and sharing my experiences. Thanks to whoever made this site!
Will
Hello David,
welcome to Disaboom.
Daisies
Hello Annette and Amy,
welcome to You too.
Hi David Amy and Annette ! Welcome to Disaboom glad to have you here. Sorry to hear all you guys have had to go through. This is a very friendly, supportive site, and advice and help come freely. Best of luck!
Welcome Will.
Salutations to Will, David, Annette, and Amy
Welcome to Disaboom.
Stay Strong
Vinny
