Hi dawn,

my name is tiffany. I'm 35 and have two siblings with muscular dystrophy - an older sister and younger brother. What kind of md does jason have? What would you like to talk about? We may have some other things in common as I was divorced and just recently married a younger man. I would love to chat with you.



tiffany

Hi there dawn and tiffany,

i am currently, concurrently doing a research paper on a physic topic, and also will be doing a research paper on muscular dystrophy. Found this site whilst searching for info on my physics research paper.

Anyway I am a carrier of muscular dystrophy and had a brother who had duchenne muscular dystrophy.

I tell you what duchenne muscular dystrophy (dmd) is an awful strain of the disease. My poor brother went through hell and so did we as his family.

As I stated above I am doing a research paper on muscular dystrophy and would like to know how you both have been effected by the disease and what community support have you had.

Anway, if you want to chat further please don't hesitate to contact me via this forum or email.

Cheers
annie :d

Hi, i'm terry from warrnambool and my brother and I have dmd.
At 53 I must admit, I am looseing my sence of humer about the desise.
When u live with dmd, a sence of humer is vital.
Anyhow, sorry for butting in, please email me, if you want info on
duchennes or (sharko-marie-tooth) as it's sometimes called, sorry about the spelling
terry

Terrie my name is monica and I have a grandmother who has als or what is better known as lou gerhigs disease. She just had her second peg put in for a feeding tube. The first one was done incorrectly and had gastric fluid drain into the inscision and create an abcess. She was refusing to have another one put in but we finally convinced her that it wasn't her time to go just yet. She is really starting to give up and we don't know what to do. Whatever you do don't let that man of yours give up. That's when this disease really takes hold. Some people have lived a really long life with this disease and everyday they are finding out more. I hope you and children will have a long life with jason and that he will be able to put off the gastric tube for a little while longer.

Hi dawn what sort of md does jason have and how is it affecting him? I am 37 and have limb girdle md recently diagnosed angie

Hi,

Angie Thornton

i have muscular dystrophy same like yours how are you doing with it ? iam suffering alot please tell me what are you doing about it and what help are you getting to get treatment i need to know so much about you becausei have the same problem, waiting for your response Thanks.

Hi i have just got your message,How long have you had your diagnosis sounds like pretty recent ! i have had mine for 3 years although it was a long journey to get it at first it was thought to be a back problem then possibly ms and finally i saw a consultant and as soon as he saw me walk he said i suspect md i didnt know anything about it then but am pretty clued up now :-
My name is Angie i am 40 years old i have lgmd type 2A my brother who is 36 was also diagnosed 2 years ago i have 2 kids but have been told they cannot get it (Thank God ) I live in Yorkshire and i would love to chat more as this is a really rare illness and its great to share experiences.My main struggles are getting up stairs ,walking i am finding that harder by the day ,and weakness in my shoulders i cant lift things or carry anything heavy ,also getting out of a chair from sitting to standing and i have a few falls when my right leg gives way on me unexpectedly especially if i have had a few vino's look forward to hearing all your details and hopefully help give you a few answers XX Angie

hi, i'v never really written on one of these before lol. but i'v been doing some research on muscular dystrophy. i was adopted at age 9 and my parents told me my biological grandmother and my mom were carriers but i was younger and i really didn't know or care then. but i'm wanting to start a family soon and i'm worried. All I have ever wanted is boys. i know my mother had two brothers that must of had it i dont know for sure i just remember seeing a picture and they both were in wheelchairs and bent over all weird and they both died very young. my mother only had daughters, i have three younger sisters out there. my mom did have a boy but it died when it was born. i'm just wondering if i could have it and if i should get tested. are they going to need medical records saying i have a family history of it? because i dont have access to that. i've just been thinking about it a lot and it's really worrying me.
thanks
katelyn

Hi,
ineed to know if there any help we get since we have thisproblem (dystropy) i tried to get a job but i failed i couldnt get any thing or if i work i get sick and i cant do certain things. i tried to get government assistance i can get any may be i dont know much thats why please help.any advice for me.

My Mother carries DMD. All the males in my family who get it die horribly by age 18. I would like to get tested to see if I'm a carrier. Has anyone had any experience with this? I spoke to one doctor who said I'd need to bring my Mother and a male member of the family with to get tested with me in order to find the gene. This is not possible. Are there any other options?

Im a carrier of DMD and pregnant. I want to be happy about this but I'm really scared...don't think I can think of it as a baby until the tests come back clear Anyoine else going through this?

rizzospud, I hope all your tests come back clear. We are thinking of starting a family soon and I have started to look into whether I may be a carrier so I can only imagine how worried you are right now. My paternal auntie was a carrier and her son, my cousin, had MD. Haven't been able to find any info of whether that makes me at risk of being a carrier. Does anyone know how that all works??

I To start with the basics,we all have 1 pair of sex chromosomes XX(female) and XY(male). The Y is a much shorter chromosome and contains less genetic coding. To demonstrate how MD passes on lets call the small x the faulty chromosome and big X a healthy chromosome. If you have XX or XY you are fine as all chromosomes are healthy. If you have Xx then you carry but do not suffer. If you get xY there isnt a healthy X to compensate so you suffer.
If it is your fathers sister then you have the same chance as an average member of the population as it is carried down the X line(maternal).If it is your mother's sister there is a chance you could be a carrier. Ask your GP to be refer you to genetics. I assume your auntie and cousin have a geneticist and have had DNA profile there. They will compare your DNA with your auntie and cousin to find out if you share the same x chromosome. The also test for a chemical called ck. I am a carrier and my ck levels are elevated. I had a brother with MD so that's how they knew to test me (My Nana, mother and my older sister are carriers).
I'm anxiously waiting now..having a scan at 10 weeks and a cvs at 11w so by week 12-13 I should know if all is well. I have just got to try not to worry too much till then, but its not easy :S