Thursday, July 11, 2013

2013 Dysferlin Conference

The following video is my speech on how exercise has helped my journey with LGMD2B. This speech was given at the 2013 Dysferlin Conference in Washington, DC this past April.

It is important to share this information because LGMD2B is very rare and often hard to diagnosis.  I was misdiagnosed with Polymyositis for two years before receiving a correct diagnosis.

Each case is different but the onset symptoms are normally the same.  The physical signs are weakness.  I first noticed great difficulty climbing stairs.  As time went on, so did the weakness.  Soon I was unable to stand on my tip toes or walk long distances.  I began falling.  It was if my legs out just give out.

My blood work showed I had very elevated CPK levels.  Some people are misdiagnosed with kidney disorders due to these findings.

My issues started when I was 16.  Sometimes the weakness doesn't happen until later in life.  Everyone is different.

As time progresses, we learn more and more about LGMD2B and how to properly diagnosis it.  If you or someone you know has these symptoms or has been diagnosed with Polymyositis or a kidney disorder and you aren't getting the answers you think you need....please contact me.   I can put you in touch with a nonprofit foundation that can possibly help with a proper diagnosis.

Bliss Welch

Click here: Bliss Welch on Living with LGMD2B

or click on the video below.


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