Name: Lena Age: 44
LGMD Sub-Type: Limb-Girdle Muscular Dystrophy type 2J/R10 Titan-related
At what age were you diagnosed?
I was diagnosed at age 42.
What were your first symptoms?
As a preschool teacher, I noticed that it was becoming very difficult to get up from the floor. Then I started falling and losing my balance.
Do you have other family members who have LGMD?
My sister and I both have been diagnosed with LGMD subtype 2J, we also think that our father and all our uncles could have had it. (They are all deceased and were never diagnosed.)
What do you find to be the greatest challenges in living with LGMD?
Not being able to do all the physical activities that I want to do. The uncertainty of the future and if my children will develop LGMD as well. Another challenge I deal with is coping emotionally with the gradual weakening of my legs and limbs.
What is your greatest accomplishment?
I am proud of being a mother and a wife. I am also proud of being active in a community social group, participating with “Rock The Vote”, and learning how to use social media to meet people all over the world.
How has LGMD influenced you into becoming the person you are today?
I am more of an advocate for my health. I am more empowered to ask questions and take actions that help me and others that maybe otherwise would be ignored or overlooked.
What do you want the world to know about LGMD?
You can still love, laugh, and live a meaningful life with LGMD. The physical limitations of our bodies do not stop us from continuing to learn and experience the world.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want do?
If I could be cured tomorrow, I would drive to the beach and wiggle my toes in the ocean!!!