Patient Stories: Breyanna

My name is Breyanna and I am currently battling dysferlinopathy. I was officially diagnosed with Limb Girdle Muscular Dystrophy in October of 2012. I was originally misdiagnosed with Polymyositis three years ago (2009). The onset of the condition weakened me and I suddenly lost my ability to stand on my tiptoes, run, squat or get up from sitting, and go upstairs without assistance. This put me into a deep depression initially and drew me away from friends and family. The only person that I grew nearer to was my mother. As I cried day and night I contemplated my life and wondered "Why me?”. I found myself mad at the world and life as I peered into my future and thought of how my life would end up thinking that I could no longer live a fulfilled life because of this condition.

 As I let the symptoms and doctors speak over my spirit I grew more and more depressed. I hated hearing "No clear identified cause and no cure". I felt hopeless. As I spoke to my mother through my depression, she asked me a question that changed my whole perspective and view on life. She asked, "Why not me?". It then made me realize that God would not put more on me than I could bear and that He is always with me. In my weakness, he is strong and through his stripes I am healed.

 As I came out of depression a wonderful blessing was presented to me. My neurologist referred me to the Jain Foundation for a DNA test to validate my diagnosis. The results came back as LGMD2B. They cleared the confusion as to why all these attempts to treating my misdiagnosis of Polymyositis failed.

 I was then offered a chance to participate with The Jain Foundation in a clinical outcome study for dysferlinopathy. I took up the chance and I am so glad I did. It has been an awesome heartwarming experience to volunteer and work with experts to research this rare condition. I feel honored to be a part of the study, continuously learning more about the condition while aiming to help come up with potential treatments and a possible cure for later generations.  I now have a more optimistic view on life and am so hopeful about the future. I am 21 and currently ambulant and able to take care of myself. I am thankful for the brains behind this effort and everyone who is putting forth a helping hand.

 

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