11/06/2015

NAME:  Siri  AGE:  28 yrs. old

COUNTRY:  Norway

LGMD Sub-Type: LGMD2A / Calpainopathy

 

At what age were you diagnosed:

I was diagnosed when I was 26 yrs. old.

What were your first symptoms:

I started experience unexplained fatigue at age 16. When I was 19, I noticed that I had trouble putting my

right arm over my head. In my early 20’s my heel cords started to bug me, being super tight. A few years

later I started struggling with stairs and low seats and I could no longer run or jump.

Do you have other family members who have LGMD:

No, I am the only family member with LGMD2A.

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

The everyday tasks people take for granted makes me really frustrated some days. Like getting out of a

chair, turning in bed or tying my shoes – all these little things make me tired and I don’t like wasting

energy on it. But the real struggle is all the extra work it is to have a disability. People don’t see all the

hours I spend doing paperwork getting the things I need and figuring out my rights, physiotherapy, doctor appointments and so on, or all the time I “waste” resting because I have overdone it one day. It is also a challenge to be dependent on other people.

What is your greatest accomplishment:

I completed 6 years in university and got my degree as a teacher. I have also visited many different

countries and hiked in various mountains despite my struggles.

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

It has taught me not to take anything for granted. It has made me more humble and thankful for all the little things in life. It has taught me to slow down and be more patient and to dare ask for help with small tasks.  And to enjoy every day! It has also made me be more creative, because I have to find new ways to do things. And I have made SO many new friends! I love that.

What do you want the world to know about LGMD:

That it actually exists is a good start! And that it affects people in different ways, but to most of us it is

super frustrating/depressing to lose abilities over time. We are always dealing with this, since it is a

progressive disease. It’s an ongoing grief. And that it affects our loved ones too. Be kind, always.

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

I would RUN! And jump all over the place. And I would dance all night long! And I would help my friends move or something, haha 😉

 

To read more “LGMD Spotlight Interviews” or to volunteer to be featured in an upcoming interview, please visit our website at:  https://www.lgmd-info.org/spotlight-interviews