I Have Muscular Dystrophy

Personal Stories, Advice, and Support 103 People

    Fighting FSH MD

    Hey folks. My name is Von Hanshaw. I am 42 years old. I was diagnosed with Fascioscapulahumeral MD in 1984 -- 29 years ago. I am now confined to a wheelchair but am still able to carry out the duties of my job as an Ordained )interdenominational) Minister. I was an athlete...
    von70 von70
    46-50, M
    3 Responses May 10, 2013

    I Have Limb Girdle There Is A Lot To My Story... So Here Is A Little Bit About Me

    Hi my name is Maddisyn. I am 14, turning 15 in march. I have limb girdle. I would like to talk to someone that understands what I'm going through. Being a teenager, it makes it hard for other kids my age to understand what it is like, and why I am not able to do certain things...
    Maddy1498 Maddy1498
    18-21, F
    5 Responses Jan 27, 2013

    Fundraiser For Muscular Dystrophy

    My name is Daniel Hoy and I have McArdle's Disease, a rare form of muscular dystrophy.  I was diagnosed with my disease in 1998 and have struggled with trying to find helpful information about my disease and how to treat it.  I am currently trying to raise funds to help put...
    danielhoy44 danielhoy44
    1 Response Feb 6, 2011

    Hello to All My Fine Friends Out There

    I was diagnost with FSHD in 1984 at the UW in Seattle WA. Since then I have been struggling to fit into the so called mold of Society where everyone is perfect with noproblems. It has been a slow progression and just the last five years my arms have gotten much worse. I...
    woodtouch woodtouch
    51-55, M
    2 Responses Jun 18, 2009

    Dealing With Md My Whole Life.

    Hi, im Kyle. I was diagnosed with Duchennes Muscular Dystrophy when I was 5 years old. So ive dealt with it my whole life basically. Ive had my ups and downs with the disease, but im known as a miracle to most doctors because im 18 and still walking. According to...
    kylefferson kylefferson
    3 Responses May 25, 2010

    A Life With Muscular Dystrophy

    I consider myself an average or so called "normal person". Not that any person IS normal. I think I want what a lot of people want: such as someone to love! To work out what this confusing thing we call "life" is all about. And most ImPoRtAnTlY, to enjoy...
    JadeLabG JadeLabG
    18-21, F
    9 Responses Nov 9, 2007

    Hi My Beloved Ones

    I am Senthil from India. I am an Chemical Engineer by profession. My brother's son (12 years) affected with MD. For a long time he was unable to walk properly. We thought he was suffering with leg weakness. We shown him to many doctors. But nobody said the exact nature...
    senthilkumarbt senthilkumarbt
    31-35, M
    Jun 16, 2010

    Mytonic Dystrophy Type 1

    So, I was diagnosed with this condition about 2 years ago. I've started writing on my calendar when one of my ankles has nearly given way. I started this because I nearly had a fall earlier in the year. I just don't know whether it's right to expect or ask for support since...
    sas16 sas16
    31-35, F
    Jul 9, 2013

    Help Improve Opportunities For People With Muscular Dystrophy.

    A friend of mine in Australia is doing this fantastic research in association with the University of Sydney. It would be wonderful (and greatly appreciated) if you could help, by undertaking a survey. www.nmdsurvey.com The survey will include the social impact of NMD...
    forums forums
    Jun 12, 2010

    Who Am I When I Am No Longer Able To Be A Nurse?

    MD is a bugger. I don't know what to do. I hate the fact that I can no longer caregive for others. Now I am stuck behind a desk. It's horrible. I've been a staff nurse either in medical/surgical or psychiatry for 28 years, now my hands won't work to take a blood pressure or open...
    quandresse quandresse
    1 Response Nov 12, 2011

    Not Personally... Yet.

    Muscular Dystrophy runs deep in my family, on my dad's side. The women are mostly affected with the type of MD that runs in the family.. not sure exactly which one it is. My Grandma died in her mid to late 50s and my aunt died in her late 30s. They weren't diagnosed 'til later in...
    flyawayhome flyawayhome
    22-25, F
    1 Response Jun 12, 2009

    Any Wives of Men With Dmd?

    i dont personally have md but my fiance' has dmd. he is 38 years old and this is pretty intense. i would love to talk to any other girlfriends or wives of men with md. sometimes it gets hard worrying how long he is going to be here. not that it would really matter because he is...
    soulsmate soulsmate
    3 Responses May 13, 2009

    My Son

    Hi everyone ,My Son has recently been diagnosed with MD , still going through all the checks to stage the disease i guess ,he is 29 years old and coming to terms as much as he can with the diagnosis .I really think he would do well with a friend at this time that is going through...
    zainaom zainaom
    41-45, F
    2 Responses Mar 10, 2013


    My name is Caitlin. I am 17 years old and I have SMA (Spinal Muscular Atrophy) type 2. I was diagnosed when I was 18 months old. My parents first noticed that something was wrong when I wasn't starting to walk when I should have been. They took me to my doctor then to a...
    walkingistoomainstream walkingistoomainstream
    18-21, F
    Oct 24, 2013

    My Md Story

    I'm Rudy.  I'm 34 years old with Duchenes MD.  To bring you up to my current status.  I started to having breathing problems in '05.  I can still spend the majority of the day breathing on my own.  I'm scared of T word.  I avoid friends that new me when I was more...
    denmea denmea
    2 Responses Nov 9, 2011

    Someone I Know

    I have a dear friend who has MD, not sure what exact type but I am very concerned for what he is dealing with. He has known about the disease since around 16-18 yrs old and is almost 30 yrs old now. What I'm most concerned about is him being lonely. He is a great person but has...
    3 Responses Jan 13, 2013

    I Am Really Starting To Hate The Pain.

    HI my name is Gill I am 31yrs old I have had MD (not sure on exact type) since I was told birth. I am very lucky to be walking and still fuction normaly but it is really taking a toll on me mentally again. Almost the same felling that I had in school wake everyday scared and in...
    Gilpa Gilpa
    2 Responses Mar 13, 2012


    Morning all This is the way I deal with my MD deamon I had an experience I would like to share. I call it Sunday lunch gone badly Like usual the family gets together for Sunday lunch at my mom’s place. I prefer this option as my cooking could cause world hunger...
    mjdmartin mjdmartin
    36-40, F
    1 Response Jul 16, 2010

    Hey everyone.. Just wanted to share a thought.

    I was just going through an article the other day with a title, SCIENTIFIC BASIS OF LOVE AND ATTRACTIONS. According to it, all these feelings are nothing but just a modified form of the basic animal instincts of which human being is still not free. It stated that a man gets...
    sarika281 sarika281
    22-25, F
    Nov 20, 2015

    That Doesn't Stop Me

    Hi I am Jennifer bedard I am 12 years old. I have a mild form of muscular dystrophy. It makes it hard for me to open up a new jar of peanut butter. What bugs me the most is that I feel hat I am so held back when I am running. And then I remember that at least I CAN run. Most...
    Jennifer12345678910 Jennifer12345678910
    3 Responses Jan 9, 2013

    Becker's Muscular Dystrophy

    I am a 21 year old boy from India... I was diagnosed with BMD in 2001 after my biopsy .Doctors said that there is no cure and I would only have to do physiotherapy to delay the progression. Went to so many places and tried various treatments in India,Ayurvedic,Allopathy...
    abstract21 abstract21
    18-21, M
    Jun 18, 2012

    I Am The Mother Of A Child Who Died Of DMD In 1980

    But that doesn't mean my story isn't relevant to your real life, right-now experience. Please visit my website, www.marylouweisman.com and read my blog -- Survivor Mom. You may also want to read the book I wrote about our family's successful struggle to thrive in the face of this...
    snickleberry snickleberry
    Feb 25, 2013

    What Can I Do

    hi  i'm 54 years old .i'm married .i have 2 grown children and 6 grandchildren.i was born with muscular dystrophy.i have rare kind of muscular dystrophy called kurlberg welander.i think that is how it spelled.it very slowly makes me weaker. i've been in a wheelchair...
    joycemosley joycemosley
    3 Responses May 4, 2009

    Lucky Me!

    I am 46 y.o who did not know i had md. My parents kept it a secret. I had problems with my gait and I couldn't dance or run. I continued with my seemingly normal life, went to college, graduated with a nursing degree, married and had kids. Before long my legs would fail and I...
    Jan 17, 2013

    I am 37 years old, I have not been diagnosed

    with muscular dystrophy yet, my last blood test indicated muscle damage and the next test is a CPK and possibly other tests, dependent upon the results of the CPK. I was reading through muscular dystrophy types and came across Myotonic MD, I have had many of the issues that...
    tgraef tgraef
    36-40, F
    1 Response May 15, 2014

    I Have Mossler Dystrophy

    Hi my name is Marvin I found out I had muscular dystrophy when I was 23 doctor did not tell me change job. My mind he Should have told me. That i do to much physical work I am now 29 and can barely move.
    Mgr2002 Mgr2002
    26-30, M
    Feb 21, 2013

    My Son Needs A Friend

    I have been searching for another child somewhere in Northeast Pennsylvania that has DMD.  I have a son who is 11 and has DMD.  He was doing well and then out of nowhere they found a huge tumor in his pelvic bone that they have tried to remove unsuccessfully but it...
    robynginger robynginger
    41-45, F
    2 Responses Nov 27, 2009

    Life… Through A Kaleidoscope

    My story begins............ just like the story of an ordinary living being, in an ordinary house, with ordinary people around and normal settings. My early memories tells me about the love of every one I came across, the joys and sorrows of a normal childhood. Every thing was so...
    yasirhkhan yasirhkhan
    31-35, M
    Oct 30, 2010

    A Doctor With Muscular Dystrophy

    my first day in medical college let me to know that i have muscular dystrophy.some how i managed to complete my MBBS. i am 30 years old . i am unmarried.in india physical disability is a real prblem. my brother helps me but he is also too busy to accompany me everytime...
    dradityagoyal dradityagoyal
    26-30, M
    1 Response Mar 9, 2010


    I am a 59 year old female, I have a genetic form of LGMD 1b. There are a couple of others in my family that have it. I started having problems falling and stairs in my 30's. I finally got it checked out when I found I was to be a grandmother. I went to the Mayo clinic and after 2...
    kareng54 kareng54
    61-65, F
    1 Response Aug 19, 2013

    My Life

      My name is Joe & I was diagnosed with Char co Marie Tooth/ MD 3 years ago. I have known for years something was really wrong & when I started going down hill at a rapid pace I knew I needed to go see a specialist. I seen one of the best that knows all about MD. Anyway its...
    JoeEH JoeEH
    1 Response Nov 18, 2010

    My Brother

    Hello my name is samantha enfield, im 15 years old, i have a brother who is 5 and has duchenne muscular dystrophy.When i found out i didnt know what it was so i didnt care but then i found out more information about it and i feel so much more heart broken, as i know what hes...
    sammy1996 sammy1996
    2 Responses Oct 5, 2011

    Life With Md

    hi everyone stumbled upon this page i was looking for a chat site for md. l am 51 years old happily married to a great man also have 2 children who are very much part of my life/ i have limb girdle muscular dystrophy which limits my ability somewhat but life goes on l have a lot...
    joylaughs joylaughs
    4 Responses Feb 27, 2009
More Stories