11/19/2015

Name:  Karen   AGE: 61 yrs. old

Country: United States

LGMD Sub-Type: LGMD1B / Laminopathy

 

At what age were you diagnosed:

I was diagnosed when I was 54 yrs. old.

What were your first symptoms:

My first symptoms included:  falling, inability to climb stairs and difficulty lifting.

Do you have other family members who have LGMD:

My sister, her son and his daughter,  her daughter, and a brother all have the same diagnosis.  There have been 2 that were also tested and do not have it.  LGMD1B has an autosomal dominant inheritance pattern which means that typically this disease appears in every generation without skips.

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

The greatest challenges for me include:  getting around, being able to get up when I sit, bathroom problems, lifting, being able to reach items, loading walker in car alone, walking, shopping, and getting dressed.

What is your greatest accomplishment:

For me, my greatest accomplishments include raising my kids and working with school children for 18 years.

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

It makes me more sympathetic to others and their issues.  I am feeling blessed to have family members around.  I  appreciate what I have left.

What do you want the world to know about LGMD

Not all disabilities are immediately visible. Some of us might not look like anything is wrong and yet people judge us. I get plenty of stares when I park in a handicap parking space. I get the look…until I have to get a cart to even walk.    I wish that more people knew how to help us –  when we fall, etc.

It is frustrating that a lot of people do not know and understand the difference between MD and MS.  I say I have MD and they still say MS.

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

I would want to be able to hold as well as sit down and play with my granddaughter.

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