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BMD Conference 2011 - RSVP Now!   by  on 2011-06-09 14:27:28
3rd Annual BMD Conference - August 13th, 2011 in Los Angeles   by  on 2011-02-02 12:28:53
BMD Registry - Very Important   by  on 2011-01-24 12:22:12
 Subject :Female with Becker MD.. 2011-07-06 14:44:07 
kmac3819
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Joined: 2011-07-06 21:24:13
Posts: 4
Location

Hi. I am a 46 year female with BeckerMD. When I was 5 years old the school doctor noticed that I walked funny and couldn't climb stairs. I was a late walker as my brother used to wheel me to school in a stroller. When I was 6, I had a muscle biopsy to determine what was wrong with me. After several blood tests and photos, I was diagnosed as having Duchenne MD. Back then in the early 70s Becker was relatively unknown in this country. I live in Australia. I would get tired easily, couldn't play sport, couldn't run.

When I was 28 years old, I seen the Specialist in Sydney who took one look at me and said I had Limb-Girdle MD and not Duchenne. After he came up to Newcastle and I had a DNA test done to confirm the re-diagnosis. This is when we found out that it was in fact Becker. I have lost the use of my legs and I have pain in my back. I also have Osteo Arthritis in my left hip and lower back. I use a wheelchair now.

Having dug deeper to understand how I have this condition, I found out through the MDA in the USA that I am a carrier of the faulty gene and that the condition has manifested itself in me. I know it is rare for this to happen in females but I am living proof that it can happen. I want to know others who are female who have this condition and how you have coped. I really need to know that I have not the only one in the world with Becker MD. Are there any other female here with the condition? Please.

 

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 Subject :Re:Female with Becker MD.. 2011-07-16 07:50:38 
BeckerMD
Ninja
Joined: 2009-08-05 11:36:07
Posts: 65
Location: Denver

Hey Kmac

I can tell you definitively that you are not the only one. The tricky part is that the boys and men get most of the attention when it comes to the condition, since it is typically more serious. Most carriers don't even know that their symptoms may be BMD related. They just think that is the way they are and don't know they might be showing signs of BMD/MD. Granted your symptoms are more serious than most carriers, but you are not alone. This website and the upcoming conference in LA Aug 13th are to help all of us BMDrs to gather together and meet other folks.

The simple fact is that most people that suffer from BMD never meet another person with the same condition......so we all feel that we are the only one.  The most amazing thing about the BMD conference is the joy that everyone feels when they can just meet and talk with other people that completely understand what they are going through.

I know you are very far away, but we'd like to invite you to come to the conference if you can at all make it. I guarantee it will be worth the trip.  If that is not feasible there will be a Live webcast on the internet that you can attend and ask questions as the conference is happening live.

Webcast link: http://www.ustream.tv/channel/bmd-2011-conference---los-angeles

Facebook Page: https://www.facebook.com/home.php#!/pages/BeckerMDorg/134052159895

- Kevin

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