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Bethlem Myopathy


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Old 04-12-2004, 06:38 PM   #1
melbtina
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Bethlem Myopathy

Hi my names Christina I'm new to this board. I'm 25 years old and at the age of 13 was diagnosed with Bethlem Myopathy. Still don't know much about it or what to expect as to what will happen later on, how weak will my arms/legs get, will I pass it on to my children how will they cope.

When I get involved with someone I feel that I have to tell them about the myopathy seeing as it is something I could pass on to my children so far I have yet to find a guy who can cope with this news!
I really want children but feel bad that I could pass this condition onto them there is a 50/50 chance. I would like to know more about Bethlem Myopathy and find out if there is anyone out there is has the same condition or knows of someone who does.

Thankyou,
Christina

 
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Old 06-06-2004, 06:22 PM   #2
PUGS
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Re: Bethlem Myopathy

Hi Christina,

I am 28 and I also have Bethlem Myopathy. I too am single and know exactly how you feel about having to tell new boyfriends about your condition. I have a double whammy because I also had leukemia when I was 19 so I never want to tell about both issues at once. I don't think I have figured out yet what the best time is to tell of these issues. When relationships have ended it was never officially due to my health problems but deep down I always wonder if they played a role. On the other hand, my brother also has Bethlem Myopathy and he is married and he and his wife just had a little girl. So far she seems perfectly healthy and we are all keeping our fingers crossed. My father is close to 60 and is still getting around some but he has stopped working and doesn't like to walk too far and he likes to avoid stairs. I hope this information helps you a bit with your concerns. I would love to hear more about how you are coping because I don't know any other women our age with this problem.

I will sign with my pseudonym while on a public forum
Sincerely,
PUGS







Quote:
Originally Posted by melbtina
Hi my names Christina I'm new to this board. I'm 25 years old and at the age of 13 was diagnosed with Bethlem Myopathy. Still don't know much about it or what to expect as to what will happen later on, how weak will my arms/legs get, will I pass it on to my children how will they cope.

When I get involved with someone I feel that I have to tell them about the myopathy seeing as it is something I could pass on to my children so far I have yet to find a guy who can cope with this news!
I really want children but feel bad that I could pass this condition onto them there is a 50/50 chance. I would like to know more about Bethlem Myopathy and find out if there is anyone out there is has the same condition or knows of someone who does.

Thankyou,
Christina

 
Old 07-09-2005, 10:44 PM   #3
shelly7368
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Re: Bethlem Myopathy

Hi Christina and Pugs
I am 37 and have Bethlem Myopathy
I have had 4 kids,they are now 7,2,and 9 months,the 7 and 2 year old seem to be fine,it is to early to tell with the 9 month old.
It has been very hard at times,but worth every minute.
I have a fantastic husband who does every thing that i can't do,like lifting and carrying the kids.
I would love to talk more about things please email me
regards shelly
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Old 07-14-2005, 05:12 PM   #4
melbtina
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Re: Bethlem Myopathy

Thankyou so much for your replies. Sorry about not posting sooner. I now have a boyfriend and we have been together a year now. He's always been into sports and wants his kids to also be involved in sports. This is worrying for me because I know what it was like at school not being able to keep up with the other kids and always getting picked last if at all for a team!

He knows about my condition and is fine with it keeps telling me there is a chance our children will not be affected.
In a way I consider myself lucky..I can do day to day tasks without a problem. Only stairs cause a concern sometimes, gets to the point where I have to really concentrate and tell me legs to move as they feel like lead weights. I've found that by doing some exercise such as pilates also helps me but if I don't keep this up I lose condition very quickly and notice walking some distance etc causing problems.

Pugs. Hope you are well. Like I said above I do feel lucky with not atm being badly affected and having not had any other health issues. I hope you to can find someone who accepts this news about the condition.

Shelly how did you go with the extra weight during pregnancy? I found that when I was at one stage 5-8kgs heavier than what I am now walking became a bit tiring. My dad has also found the same and tries to keep his weight down so his body can cope.

Christina

 
Old 07-14-2005, 10:48 PM   #5
shelly7368
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Re: Bethlem Myopathy

Hi Christina
It sounds like i have a more difficult time, as i can't manage stairs at all now.
My dad is 63 and he is still going ok ,he is starting to struggle with big step and getting up from chairs.
I have never been able to rise from a chair, i have a lift chair.
I have a brother and he is fine.
Don't know where it came from;think it was my grandfather.
He didn't show any signs when he was young' but had a hard time when older,He also had the thin wrists and ankles and the bent elbows.
I have never got to the end of a pregnancy,all my babies have been prem.
So i have never felt the full weight of a baby.
My 1st baby was born at 35 weeks, my 2nd at 30 weeks, my 3rd at 28 weeks and my 4th at 35 weeks.
The heaviest baby was just over 5 pounds, and i was in a wheelchair a few weeks before i had him because of the weight and to prevent falls{this becomes an issue as the belly grows}
With my youngest son i fell and broke my leg at 31 weeks, i spent 6 weeks in hospital before i was aloud to walk again.
This has set me back quite a bit, i am still recovering an it has been 10 months.
The doctors were not sure if i could have a baby naturally,as they had not seen anyone with bethlem pregnant,and didn't know if the uterus muscles would be strong enough to push a baby out.
I had two of my babies natually and two by c section.
So they do work.
Anyway better go,Baby crying......

Shelly. ps where are you from? i'm in Australia

 
Old 07-20-2005, 12:33 AM   #6
melbtina
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Re: Bethlem Myopathy

Hi Shelly,

I'm also in Australia I hope you are going well and that your recovery continues to improve. How did it come about to you and your family being diagnosed with Bethlem Myopathy?

I was born with a congential hip dysplasia (doctor didn't check me at birth and it wasn't discovered until I was 2 1/2!) I had to go to hospital yearly for checkups and for some reason when I was 13 my grandmother decided to have some tests done because she was concerned at how many of her children had shown signs of muscle weakness. So on top of my normal checkup they done some tests.
The doctors thought it was something new, after two biopsies and some other tests I found out about Bethlem Myopathy. The doctors said that I was the worst affected..which surprises me now seeing as after hearing from other people I'm really not badly affected at all.

Christina

 
Old 07-20-2005, 06:17 AM   #7
shelly7368
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Re: Bethlem Myopathy

Hi Christina
I was diagnosed with bethlem myopathy 7 years ago when i was pregnant with my first born son.
I wanted to know what would happen to me and my baby.
I had seen many doctors over the years, and all told me i had different things or said they didn't know what was wrong.
I seen a specialist in Melbourne who took one look at me and knew straight away what i had as this is what he specializes in,he said i was the worst he had seen.
Have you put Bethlem myopathy into google? There is so much information.
Are you registered with the MDA forum? not much info on our type of MD but interesting to read,and find out a bit about other types of MD
I have just had a ramp built at my front door which makes life a bit easier.
Talk to you soon Shelly.

 
Old 08-15-2005, 05:58 AM   #8
shelly7368
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Re: Bethlem Myopathy

Hi Christina.
I haven't heard from you for a while, hope you haven't come down with any of this years colds and flues.....
Hope you didn't miss my last post, we are now on page 2.
Shelly

 
Old 10-15-2006, 12:38 AM   #9
jcniii
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Re: Bethlem Myopathy

I was diagnosed with some sort of MD when I was 5-6 years old...my brother also has this MD. From 1990 until recently we were diagnosed with Rigid Spine Syndrome...my current neurologist feels this is incorrect since I have finger contractures and can touch my chin to my chest.

I have submitted a DNA sample to the only university in the states that can test for Bethlem Myopathy using the COL6a tests.. I will know the results in early December.

Do any of you know of the studies about cyclosporin A and Bethlem Myopathy? A google search will yield some interesting stuff but apparently not much else has been done since the original studies several years ago.

Any help or info that you have would be appreciated and will be glad to share what I've find out. Whatever this MD is it has shifted into high gear in the last few years and is making life more difficult everyday.

Thanks,

j

 
Old 10-19-2006, 09:47 PM   #10
shelly7368
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Re: Bethlem Myopathy

Hi J,
I have just had a skin test and blood test done 6 weeks ago, i got one blood result yesterday which was clear for kugleburg wylander, i am still waiting on the result for rigid spine etc.
I proberly have bethlem or ullrich which are now thought to be the same condition.
Hope you will tell me more about yourself.
Shelly.

 
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