Name:  Victoria

Age:  38

Country:  USA

LGMD Sub-Type: LGMD D1 DNAJB6-related

At what age were you diagnosed?

At 37, I received an official diagnosis although I was suspected to have MD (unknown type) since age 14.

What were your first synptoms?

My first symptoms included difficulty running, climbing stairs, and rising from a seated position.  In general, there was overall weakness in my arms and legs.

Do you have other family members who have LGMD?

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

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

The greatest challenge in the decline in performing daily tasks independently such as dressing, driving, bathroom challenges, making dinner, etc.  Acceptance!

What is your greatest accomplishments?

Keeping a positive attitude about the disease to my son, and never showing him how down I feel or those daily struggles.

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

I’ve become more vocal and comfortable in talking about the disease. I shifted from self-pity to educating those on ableism, awareness, and empathy.

What do you want the world to know about LGMD?

As a community, we are no different than anyone else. We are all human beings who deserve the same respect, love, and acceptance.

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

I would fly to Paris!