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Disaboom » Health » Muscular Dystrophy » New to disaboom and newly diagnosed with a mito disease

New to disaboom and newly diagnosed with a mito disease

Last post Tue, Apr 08 2008 11:08 AM by Wheelin Rev. 7 replies.


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  • Louannc Louannc
    Posts: 5
    • permalink New to disaboom and newly diagnosed...

    • Posted: Wed, Mar 19 2008 9:55 PM

    •  Hi, my name is Louann.  I am 25 years old, new to disaboom, and newly diagnosed with a mitochondrial disease.  I was recently diagnosed with a rare disease called MERRF syndrome (Myoclonic Epilepsy associated with Ragged Red Fibers). It's a mitochondrial disease.  It causes me to have seizures and muscle weakness that gets worse over time (a muscle problem similiar to limb-girdle muscular dystrophy). 

       

      I'm in medical school, studying to become a physician. This disease is not stopping me, as I fully intend to graduate and practice medicine. I'm looking to specialize in Neurology, specifically in Neuromuscular Medicine. I am also a concert pianist and am about to release my classical piano cd, "Louann Carnahan, Piano Masterpieces". I'm selling the cd as a fundraiser  for the United Mitochondrial Disease Foundation.  This project is called "beat MITO" and will raise money for mitochondrial disease research. Proceeds benefit the United Mitochondrial Disease Foundation. All the songs on the CD are very well-known and popular. Here's a link on the United Mitochondrial Disease Foundation's that has information about this fundraiser:

       

      http://www.umdf.org/site/apps/nlnet/content2.aspx?c=dnJEKLNqFoG&b=3634599&ct=5118165

       

      Check it out! 


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  • beatle beatle
    Posts: 3
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Thu, Mar 20 2008 4:53 AM

    •  well louann good to see you sharing with us, may you have good fortune in everything you to do! 
       Glad you're my friend, and I will support you 100% you're friend always. . . .   Glen. 


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  • Nightengale Nightengale
    Posts: 453
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Thu, Mar 20 2008 7:10 AM

    • I don't have MD so I hope it's OK I'm posting in this thread -

       

      Just wanted to say Welcome to another health care professinal with a disability.  I'm a pediatrics resident with cerebral palsy, Type 1 diabetes and some other stuff.  I'm going to specialize in developmental disabilities.  One of my passions is networking with premeds, med students and other doctors (and allied health professionals) with disabilites to share tips and combat the discrimination and misunderstandings that some of us experience.


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  • Vinny Vinny
    Posts: 279
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Thu, Mar 20 2008 9:11 AM

    • Hi Louann,

      Welcome to Disaboom. I admire your tenacity!

      Stay Strong

      Vinny

       


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  • Louannc Louannc
    Posts: 5
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Thu, Mar 20 2008 4:31 PM

    •  Thanks for you friendship and support, Glen!  love ya's  Smile


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  • brokenwings brokenwings
    Posts: 73
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Sun, Mar 23 2008 9:38 PM

    • hey Louann!

      I just joined disaboom and I also have mito! :)

      I was diagnosed last year though I've been sick since my late teens (I'll be 27 soon) and they kept mis-diagnosing and realized it when they were testing me for polymyositis (muscle biopsies, bloodwork, MRIs, EMG) since the symptoms are similar. I have seizures as well.

       I was also pre-med but left school after my brain injury (car accident) and hope to go back. I was in rehab for 4 years. Hopefully I'll eventually finish school! :)


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    • Filed under: mito, mitochondrial disease, muscle biopsies, seizures
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  • shellGVchick shellGVchick
    Posts: 657
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Sun, Mar 23 2008 10:04 PM

    • Welcome Louann,

      Glad to have you with us and thanks for sharing.  It sounds like you can turn a difficult thing into a positive with your schooling.  Takes a very big and strong person to be able to fight through your illness and conquer some thing as big and wonderful as medical school.  There are few who come to the site on a regular basis who have medical background or training etc.  Night is one, you just met her. She's one you'd love to get to know.  Best of luck to you.


    • ~Shelley~

      People too weak to follow their own dreams, will always find a way to discourage yours!
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  • Wheelin Rev Wheelin Rev
    Posts: 723
    • permalink Re: New to disaboom and newly diagnosed...

    • Posted: Tue, Apr 08 2008 11:08 AM

    • Louann,

       

      Wow! I listened to your masterpieces and all I can say is, bravo! I too am associated with the UMDF as a past group leader and currently part of an adult advisory committee. We are working on establishing a local mito support group in the Baltimore - Washington corridor.

       

      Looking forward to seeing more of your posts as you continue your journey with mito. Being an accomplished pianist, med student and all of the volunteer work you are involved with; may God richly bless you!

       

      C ya around!

       

      Dave


    • My D.I.S.ABILITY is a Do It Sitting ABILITY ! ! ! ™

      Pastor Dave's Ministry

      Find Your Church at MyChurch dot ORG

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