Name:   Kae                Age:  29 yrs. Old

Country:   Canada

LGMD Sub-Type:    LGMD 2B/R2 Dysferlin-related / Miyoshi Myopathy

 

At what age were you diagnosed?

I was diagnosed with LGMD when I was 17 years old.

What were your first Symptoms?

Not being able to walk on my tippy-toes, jump high, climb 2 steps at a time, or run as fast starting

around age 14.

Do you have other family members who have LGMD?

Yes, my older brother also has LGMD.

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

The greatest challenges are safety and independence…followed by the social / romantic / employment aspect.

What is your greatest Accomplishment?

Moved out at the age of 18, got my bachelor’s degree, my full driver’s license, owned my own car and established my own freelance /advocacy career.

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

It has really allowed me to not take the little things in life for granted…I practice gratitude and mindfulness daily. I have learned that I am more capable and stronger than I ever imagined I could be. I handle and cope with adversity quite well now and I am a much more spiritual person because of this journey. I’ve also learned the value in prioritizing my mental health and focusing on what I can control.

 What do you want the world to know about LGMD?

It can be an isolating, invisible disease/disability…just because we do not talk about it, doesn’t mean we’re

not struggling and that it does not impact us mentally/emotionally too. We want to be seen for more

than our disability but we would also like you to acknowledge and understand our challenges.

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

I would dance!

INDIVIDUAL WITH LGMD: Kae
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