LGMD “Spotlight Interview”
Country: United States
LGMD Sub-Type: LGMD 2A/R1 calpain 3-related
At what age were you diagnosed?
I was diagnosed at age 23.
What were your first symptoms?
My symptoms at the beginning were light weakness from my lower body, it was hard to go up the stairs as fast as I was used to, or getting up from the floor especially when we would sit in the quad in Physical education class. Keep in mind these symptoms started in the 11th grade of high school. Yet I was not diagnosed until I was 23.
Do you have other family members who have LGMD?
No other family member has been diagnosed with LGMD. I have two younger siblings and they have not gotten tested but they are past the age of 23 and both are doing fine at the time being.
What do you find to be the greatest challenges in living with LGMD?
Personally, for me, the greatest challenge is accepting the person I am becoming. I say that because sometimes, I realize that a lot of changes that I am going through are not my choice and are out of my control. One of them is slowly losing my independence to fend for myself. After living a very independent life and feeling like the world was there for the taking, to feeling a sense of losing that vision of the future, has been and will most likely be my biggest challenge.
What is your greatest accomplishment?
My greatest accomplishment is finding my voice. I am not as big an advocate as I would like to be, but I have talked about myself and my story a couple of times. I made a YouTube channel and told my story from my own perspective, and I am also very proud of myself for going back to school, to finish my education that was stalled due to the diagnosis of this disability.
How has LGMD influenced you into becoming the person you are today?
It has opened my heart, mind, and soul in a way nothing else ever could. I want to believe I was always very empathetic and have a big heart, but unfortunately a very weak heart. I was bullied a lot as a child and went through trauma. Now that I am going through this, I feel all that from the past prepared my heart, for this battle. I say that loud and proud because I am stronger now emotionally than I ever imagined being. If I were to speak to my younger self about me today, I would not believe myself.
What do you want the world to know about LGMD?
I want the world to know, we matter. LGMD is a physical disability, but it takes a toll on your emotional, mental, and even spiritual health. So please help others tell their truths, their stories and help us spread to the world our message of hope, that one day we can find a cure.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do?
If I could be cured tomorrow there are so many things, adventures, outings, and events I would attend and go to. But one thing I would for sure continue doing is advocating, and working hard to make sure everyone that can also be cured, get the chance they deserve. Because after living with this, I can not get up and live my life and never look back as if nothing ever happened.