Jill

LGMD Spotlight Interview

Name:    Jill              Age: 33 yrs. old

Country:    United States

LGMD Sub-Type:    LGMD2i

 

At what age were you diagnosed:

I was diagnosed at the age of 27.

What were your first symptoms:

In elementary school, I was always the last child to cross the finish line in gym. I also remember having to sit out of school activities due to painful leg cramps. However, I was on the dance team and had a super normal childhood. After the birth of my first child in 2008, at age 23, I started presenting to the ER off and on with fatigue and pain. I remember telling my husband, “There’s something wrong with me and someday I will figure out what it is.” After the birth of my second daughter in 2010, I struggled with the physicality of having a toddler and a newborn. I was no longer able to climb a flight of stairs without great effort. I still thought “maybe this is just what tired moms feel like.” Then in 2011, I went into rhabdomyolysis after catching a virus and spiking a fever. I went to the doctor with severe weakness and my CPK was 11,000. That finally led us down the right path and a diagnosis of LGMD2I was uncovered. Like many of you, it was a long road to diagnosis.

Do you have other family members who have LGMD:

No, I am homozygous recessive, so both of my parents were carriers. Thankfully, my brother and sister are unaffected.

What do you find to be the greatest challenges in living with LGMD:

My girls were babies when I was diagnosed. A year later my husband was diagnosed with brain cancer. I feared that I wouldn’t be able to care for my family. I spent many hours worrying about what was going to happen to us. I try to stay in the moment and enjoy the good times. It can be challenging to keep my “head in the game” and not anticipate my decline or let frustration and pain put me to bed. However, I am here, today. My husband is here, today. My kids are amazing and resilient. So, I remain thankful and we carry on.

What is your greatest accomplishment:

My greatest personal accomplishment is my happiness. I’ve worked really hard to be happy, despite our challenges. I’m really proud of that.  It’s a choice that I try to make every day.

How has LGMD influenced you into becoming the person you are today:

I do feel that I am living a more meaningful life after diagnosis. I love my people more intensely. I’ve learned to slow down, because I have to, and that isn’t a bad way to do life. I’m also thankful for the opportunity to understand and have empathy for those with chronic disease, pain, grief… all of those invisible diseases that can so easily be misinterpreted as laziness or lack of effort. I see you and I am sorry it is hard.

What do you want the world to know about LGMD:

I want the world to know that LGMD is a genetically inherited disease and not one of “nutritional deficiency” or a result of not going to the gym. This isn’t a disease that people choose. It is progressive and there is no cure. Although staying positive and remaining active will help, it will not stop the progression. In my mind, the best thing to say to someone with LGMD is, “I know it’s hard and you are doing such a good job.” It would be so wonderful to find a treatment or a cure in the future. It’s good to remain hopeful.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

Give my girls piggyback rides to school, throw a huge party, and go on a family bike ride around our favorite lake.

 

 

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Lori

LGMD “SPOTLIGHT INTERVIEW”

 

Name:  Lori  Age: 47 yrs. old

Country: United States

LGMD Sub-Type: LGMD2i

At what age were you diagnosed:

I was diagnosed at the age of 41.

What were your first symptoms:

The first symptoms that I noticed were muscle weakness and falling although at the time I didn’t realize that they were anything serious.

Do you have other family members who have LGMD:

Yes, my younger sister also has LGMD2i.

What do you find to be the greatest challenges in living with LGMD:

My greatest challenge is lacking the energy and physical strength to do everything I used to do and everything I want to do.

What is your greatest accomplishment:

My greatest accomplishments are raising my two sons (ages 17 and 24) and becoming an attorney.

How has LGMD influenced you into becoming the person you are today:

Having LGMD causes me to be more grateful for what I can do and for the people in my life.

What do you want the world to know about LGMD:

I would like people to know that LGMD is a genetic disease for which there is no treatment or cure at this time.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

If I was cured tomorrow, I would like to go hiking or for a long walk.

 

* * * To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews

 




Karen

LGMD “Spotlight Interview”

Name:  Karen  Age: 54 Yrs. old

Country: USA

LGMD Sub-Type:  LGMD 2I

 

At what age were you diagnosed?

I was diagnosed at the age of 33.

What were your first SYMPTOMS?

My first symptom was an overall weakness compared to other kids in gym class in grade school.  High School gym class was even worse.  I experienced tight hamstring and calf muscles.  My calves were large. Next was the noticeable change in my gait.

Do you have other family members who have LGMD?

No, I am the only family member diagnosed with LGMD.

What do you find to be the greatest challenges in living with LGMD:

The greatest challenges of living with LGMD are completing daily personal and household tasks, managing activity and rest, being prepared to access public spaces, and planning for future needs.

What is your greatest accomplishment:

With the love and support of my family and friends, I embrace and experience life in spite of ever changing limitations and obstacles.  That is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are TODAY?

Living with LGMD has formed me into an accepting, determined, resourceful, humble, and grateful person. I learned to accept my diagnosis and realize that, as it progresses, it provides me with the opportunity to grow as a person.

What do you want the world to know about LGMD?

LGMD is a progressive disease.  It affects every thought that goes into every motion of every day.  Continued research and development for a cure, treatment, and assistive devices are essential.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

If I was cured tomorrow, I would Rollerblade!

 

* * * * * To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Anna

LGMD SPOTLIGHT INTERVIEW

Name:  Anna   Age:   36 yrs. oldlgmd2i-anna

Country: Canada

LGMD Sub-Type:  LGMD2I

 

At what age were you diagnosed:

I was initially diagnosed with a “non- specific muscle myopathy when I was a young child (sometime in grade school). Later in life, when I was 26, I was given a “working diagnosis” of LGMD. Finally, at the age of 36, I was formally / clinically diagnosed with LGMD 2I via genetic testing.

What were your first symptoms:

I’m not really sure what my first symptoms were because though I had this disease from birth my parents never talked to me about it. They felt that because my symptoms didn’t medically impact my life then there was no need to dwell on them. Looking back on it- if I had to guess- my earliest symptoms (that I can recall) were toe- walking, and achy calves. I also recall not being able to easily participate in some gym activities like cross- country running and gymnastics.

Do you have other family members who have LGMD:

I have three brothers. It is interesting, the two brothers closest in age to me are affected with LGMD but my youngest brother (who is seven years younger) is not affected at all and, in fact, is extremely athletic.

What do you find to be the greatest challenges in living with LGMD:

For me, the first greatest challenge is the ever changing needs of this disease- sometimes it’s hard to keep up! For example, you get used to doing a certain task one way and suddenly, one day, you can no longer do it that way (or you might discover you can no longer do that task at all). Also,  you buy a piece of equipment to assist you and it works for a while but then you reach a place where it is no longer helpful and have to either buy yet another piece of equipment or think of something else.

The second greatest challenge living with LGMD, for me, is not knowing how this disease will affect your future. Every one progresses differently, to varying degrees and rates so it is difficult to anticipate what your future needs will be or to plan any kind of future because physically you just don’t know what kind of shape you will be in.

What is your greatest accomplishment:

I work very hard to live a full life so it’s hard for me to name one accomplishment. Sometimes living with disease just getting out of bed feels like my greatest accomplishment J In all seriousness though, I am a mother to two children (one biological and one adopted) so watching them grow gives me tremendous joy and gives me an immense sense of accomplishment.  I was also a parish priest for almost ten years and so I had the great honor of journeying with people through their most difficult times. Knowing that I may have helped them navigate that tough patch (even if it was to a small degree) gives me a sense of pride.

How has LGMD influenced you into becoming the person you are today:

LGMD has influenced my life in many ways.  It has taught me to be adaptive to my environment. I think, when living with this disease, you naturally learn to think outside the box.

It has also taught me not to dwell because when you dwell you feel ‘stuck’ which isn’t helpful or healthy.   LGMD has also given me the gift to appreciate all the little things in life. Most importantly, LGMD has given me the ability to not take myself so seriously. My youngest daughter tells me regularly that I am” goofy” and I’m good with that- life is too short and too uncertain not to give pause and have a good laugh. One of my mottos in life is: “If plan ‘A’ doesn’t work, there are twenty five more letters in the alphabet!” J

What do you want the world to know about LGMD:

This disease affects everyone differently and even with the same person it affects them differently depending on the day and surrounding environment. This means that sometimes there may be a lot of anxiety for the person with M.D. Sometimes a seemingly simple and mundane task to an able- bodied person can seem overwhelming to a person with M.D. because of the process and/ or physical barriers involved.  All I can say to the world, friends, family and caregivers is that it’s important to love and support those with M.D. not just physically but emotionally and psychologically too–  even when you may not completely understand what it is they are feeling and why.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

If I woke up today and had no symptoms I would, without a doubt, head directly to the beach!

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Tony

LGMD “Spotlight Interview”

Name: Tony  Age:  32lgmd2i-tony-h

Country: United States

LGMD Sub-Type: LGMD2i

 

AT WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed with LGMD around the age of 26 at the Cleveland Clinic and then officially diagnosed with 2i last year through genetic testing.

WHAT WERE YOUR FIRST SYMPTOMS:

Looking back, I was always struggled to keep up a bit with other kids while playing sports, hiking, running, etc. My first noticeable “something might be up” symptoms started showing while I was touring the country with bands and loading gear every night about 10 years ago. I began to struggle a bit doing things I’d previously never had problems with (going up stairs without using a handrail, carrying large gear, etc.)  I continued to notice small things getting more difficult through college but (of course) ignored it for years.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

Nope. Just me.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:

Adjusting and adapting and giving up things I’ve greatly enjoyed. Having to be extremely careful with seemingly every single movement. I greatly miss things like going for a run (even if it wasn’t quite graceful), walking to get groceries, and just getting from point A to point B uninhibited.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

Finishing college after putting it on hold to play music and travel all over with my friends. Writing comedy for an independently released movie, web series, and book. Moving to Los Angeles and pursuing/accomplishing a career in entertainment/media and marrying the most perfect person for me in the world.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

It’s greatly improved my problem solving skills; making me more resourceful, creative, and patient. I’ve been able to apply that to my career and other parts of my life that have definitely made me a better teammate, friend, husband, and creative person. At least I think it has and I hope others would agree!

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

A good start would be getting the entire world to know it actually exists. That it’s a major struggle for those affected but so many of us are living happy/productive lives, and there are treatments and cures on the horizon that we’d love everyone’s help and understanding in pushing them to the finish line.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:

Man…I think about this constantly so I already have the day planned: I’d take my dog for a nice, long walk (maybe run?). I’d carry all the groceries in instead of needing my small wife to deal with it. I’d play hacky sack with some college dudes and maybe try this “hiking” thing that people in Los Angeles seem to love so much.

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To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Melanie

LGMD Spotlight interview – 09/02/2016

 

Name:  Melanie  Age:  29 yrs. oldLGMD2i - Melanie B

Country:   Germany

LGMD Sub-Type :  LGMD2i (heterozygous type)

 

At what age were you diagnosed:

I was diagnosed at the age of 4 by having a muscle biopsy.

What were your first symptoms:

I always fell when I tried to run and to take the stairs.  This resulted in many bruises and scars!  In addition, I couldn’t get up from the floor by myself.   These symptoms already showed up around the age of 2.

Do you have other family members who have LGMD:

No, I am the only one in my family with LGMD.

What do you find to be the greatest challenges in living with LGMD:

The greatest challenge is to make people understand that I’m not too lazy to do everyday tasks but I am too weak to do them on my own.  Another challenge for many of us is accepting a wheelchair as your best friend!

What is your greatest accomplishment:

There are far too many accomplishments!  Living a good life with LGMD is an accomplishment in itself!  On my blog (www.littlemissturtle.com) I write about all of my accomplishments and adventures on wheels.

How has LGMD influenced you into becoming the person you are today:

I grew up with LGMD.  It made me a very strong person.  Dealing with a progressive disease that causes muscle weakness and atrophy while being fully conscious  about it is a demanding challenge  I appreciate every day of my life!   I stopped working recently to have more time to do all the things I love.  LGMD taught me to take things the easy way.  Enjoy more, worry less, stay positive and spend as much time as possible with loved ones.  That’s my way!

What do you want the world to know about LGMD:

LGMD is a rare and tricky disease.  It cannot be compared to any other disease like Multiple Sclerosis (MS), etc.  It is important to fully listen to a person who has LGMD when he or she asks for assistance – to avoid hurting him or her in the process.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would get up from the bed by myself, dress and then go for the walk of my life!  I would walk for as long as my feet would carry me.

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at: http://lgmd-info.org/spotlight-interviews




Donna-Marie

06/24/2016

LGMD “Spotlight Interview”

Name:  Donna-Marie      Age: 32 yrs. oldLGMD2i - Donna-Marie

Country: United Kingdom

LGMD Sub-Type: LGMD2i

At what age were you diagnosed:

I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the subtype a few years later.

What were your first symptoms:

Generally being slower than other children in PE lessons. My teachers noticed that I couldn’t keep up but knew I was too much of a goody two shoes that I had to be trying my hardest!

Do you have other family members who have LGMD:

Nope, I’m 100% unique J

What do you find to be the greatest challenges in living with LGMD:

The greatest challenge for me is how it affects me mentally; I know that I am lucky with my LGMD and that I could have much bigger problems so I try not to complain too much about it but  I did spend a couple of years wanting to hide from the people who stare at me and my limp. My boyfriend of 4 years has changed my attitude to my disability more than I could have ever imagined and although I don’t care about people looking at me anymore, I sometimes struggle when we go out as I feel embarrassed for him when people stare at us and feel like he should be with someone “normal” at his age.

I also hate that I can’t storm off during an argument, especially if I’m sat down on a low chair, ha ha!

What is your greatest accomplishment:

I’d love to say that my greatest achievement is something to do with a career but I have to say that in that department I don’t have much to brag about. But I find it an accomplishment that I manage to keep going and stay positive. I have a modest career but I do still work and socialize.  I don’t try to hide away anymore feeling like Quasimodo!

How has LGMD influenced you into becoming the person you are today:

LGMD has made me grateful for the amazing people I have in my life. I could not wish for a better family, partner or friends.

What do you want the world to know about LGMD:

I’d like the world to know that LGMD doesn’t affect my brain or my eyes!

I don’t need to be talked to like a child and I can see the nudges, whispers and stares.

 

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

There are so many things I could list here but the truth is that I think the very first thing I would do is go out and celebrate with as many drinks as I could handle and not worry that if I fall down, I stay down! And maybe throw in dancing on a few bars J

But as that was a pretty rubbish answer I’d like to add that afterwards I’d go away on a nice holiday with my boyfriend and family where none of them had to worry about if the ground was too uneven, or if there are any steps, or that I can’t walk on the beach or get in/out of a pool or up from a chair.

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  http://lgmd-info.org/spotlight-interviews




Samantha

08/07/2015:

Name:  Samantha  AGE: 7 yrs. oldLGMD2i - Samantha

COUNTRY: USA

LGMD Sub-Type: LGMD2i

 

At what age were you diagnosed:

I was diagnosed at the age of 2.

What were your first symptoms:

My mom and dad saw me fall a lot and I had trouble keeping up with my friends.

Do you have other family members who have LGMD:

No, I am the only person in my family with LGMD.

What do you find to be the greatest challenges in living with LGMD:

I don’t like not being able to run as fast as my friends at school.  It’s hard to do gymnastics but I still have fun trying.  My mom and dad make me take a vitamin called “CoQ10” and I don’t like the way it tastes.  I also don’t like wearing my stretching boots at night.   I don’t really like people knowing that I have LGMD because it’s kind of embarrassing.

What is your greatest accomplishment:

I’m proud that I can read chapter books now and that I am able to ride horses.  I am also excited that I can go off the diving board and swim in the deep end in the pool.   I hit the ball well when I play softball and I get excited when I make it on base.

How has LGMD influenced you into becoming the person you are today:

I get to do lemonade stands and sell bracelets with my cousins to raise money for LGMD.   I’m lucky that I met other people who have LGMD when I went to a conference in Iowa.  They are my friends now.

What do you want the world to know about LGMD:

It’s hard to have LGMD but sometimes I meet other people who have disabilities that are worse than mine and I realize that LGMD isn’t really that bad.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would throw my stretching boots out the window and go to Hershey Park to celebrate!




Audrey

04/25/2015

NAME:  AudreyLGMD2i - Audrey

AGE: 42 Yrs. Old

COUNTRY: United States

LGMD Sub-Type: LGMD2i

AT WHAT AGE WERE YOU DIAGNOSED:
I was diagnosed with LGMD when I was 37. I had never heard of it before my diagnosis.

WHAT WERE YOUR FIRST SYMPTOMS:

I noticed in my twenties I began having trouble climbing stairs, raising from the floor, and lifting my legs. Unfortunately, I didn’t know how abnormally weak I was becoming. I thought I was just out of shape or uncoordinated. When I needed physical therapy for shoulder pain, the PT sent me back to my doctor because she recognized something was seriously wrong.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

My older sister also has LGMD2i, but her progression is slower.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:

My greatest challenge has been to accept help without feeling like a burden on others. I’m still able to walk, but I need a lot of help from my family with everyday life. I am so fortunate to have such a great family support system. Sometimes I can’t believe how lucky I am!

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

I’ve spent the last 23 years being a mother to my 3 daughters. Motherhood is certainly my greatest accomplishment.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

LGMD has allowed me to simply accept what life offers. When faced with this diagnosis and an uncertain future, I’ve found out I’m still okay… I can do this, and I’m going to be okay!

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

I think it would be great to put LGMD on more people’s radar. Most doctors I’ve seen haven’t heard of it.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:

If I were cured tomorrow, I’d run. I’d run as far as I could, then I would climb the stairs. I’d help every person who dropped something pick it up. I would plant and tend a beautiful garden. I would never take these legs for granted!




Jane

04/20/2015:

Name:  Jane

Age:  18 yrs. old

LGMD2i - Jane

Country:   United Stated

LGMD Sub-Type:  LGMD2i

 

At what age were you diagnosed:

I was diagnosed when I was 5 years old.

What were your first symptoms:

I was experiencing difficult climbing stairs and keeping up with my peers on the playground.

Do you have other family members who have LGMD:

No, I am the only person in my family with limb girdle muscular dystrophy.

What do you find to be the greatest challenges in living with LGMD:

I find that it is difficult searching for accessible paths when in an unfamiliar setting.   It can also be challenging to have to pace myself – more than my friend.

What is your greatest accomplishment:

I suffered a major accident in October, 2014.  My greatest accomplishment is working so hard to walk independently again.  I was told no weight bearing on my legs while in the hospital for a month.  But, after several consultations with multiple doctors, they reversed the orders.  I worked hard every day to be able to walk out of the hospital on my own, one month later!

How has LGMD influenced you into becoming the person you are today:

It has taught me to think outside the box – to be creative and original.

What do you want the world to know about LGMD:

Just because one is physically disabled doesn’t mean you are mentally disabled.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would run a race and jump for joy!




Melissa

04/08/2015

NAME:   Melissa  AGE:  47 Yrs. OldLGMD2i - Melissa

COUNTRY:  United States
LGMD Sub-Type:  LGMD2i

AT WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age of 18

WHAT WERE YOUR FIRST SYMPTOMS:

As a child, I was clumsy.

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

No, I am the only member in my family diagnosed with limb girdle muscular dystrophy.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:

The greatest challenge for me is not being able to get up from a chair.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

My greatest accomplishment is growing my non-profit, Legacy Counseling Center, into a one and a half million dollar organization that helps thousands of people annually.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

I changed my career choice to something that would be wheelchair friendly, in case I would ever be in that position.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

At the moment there is no treatment or cure.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:

I would travel without boundaries like I used to.




Lacey

04/03/2015

NAME:  Lacey    AGE: 42LGMD2i - Lacey

COUNTRY: United States

LGMD Sub-Type: LGMD2i

 

AT WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed with Muscular Dystrophy at 16 and LGMD2i at 34. Both diagnosis’ came over the phone. In hindsight, I wish the doctors would have told me in person, I had so many questions and was scared.

WHAT WERE YOUR FIRST SYMPTOMS:

The first symptoms I noticed were painful leg cramps when running and not being able to keep up with the other kids. I was told I was lazy and to try harder in PE and in softball. I remember thinking, “I am trying as hard as I can, how do I make myself go faster like the other kids?”

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD:

No, I don’t have any other family members with LGMD.

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD:

The constant changes and trying to find ways to adapt to my new normal.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

My greatest accomplishment is living each day as it comes with compassion and courage, being a wife to my supportive husband, and a mom to our loving girls.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

LGMD has forced me to slow down, to become present and aware. I am a stronger, more empathetic person because of this disease. I have learned to cry and laugh at the same time.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

I would want the world to have more awareness of LGMD, especially doctors. I know for many of us, the road to getting a diagnosis is a long one and it doesn’t have to be. Some LGMD’s have cardiac and pulmonary issues and I think it’s essential to have knowledgeable doctors monitoring and providing support.

IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:  The first thing I would want to do, is run-I wish I could remember what it feels like.  Sometimes when I’m driving in my scooter, I close my eyes and pretend I’m running-it gets a bit dangerous 🙂