NAME: Katsuya AGE: 45 yrs. old
LGMD Sub-Type: LGMD2B / MMD (Dysferlinopathy)
At what age were you diagnosed:
I was diagnosed at the age of 24.
What were your first symptoms:
I was not able to jump.
Do you have other family members who have LGMD:
What do you find to be the greatest challenges in living with LGMD:
It is to support a researcher.
What is your greatest accomplishment:
I have established PADJ (Patients Association for Dysferlinopathy Japan) which was established for the communication between Japanese and international patients with dysferlinopathy (Miyoshi myopathy, Miyoshi muscular dystrophy 1 (MMD1) and limb-girdle muscular dystrophy type 2B (LGMB2B), development of early treatment for dysferlinopathy aimed at a complete cure.
How has LGMD influenced you into becoming the person you are today:
I had to change a dream. It was a very difficult problem. However, I was able to meet the friend who was in the world.
What do you want the world to know about LGMD:
The dysferlinopathy (MMD/LSMD2B/ DACM)) is a rare disease. I do not know the exact number of dysferlinopathy patients in Japan.
It is a form of LGMD. Let’s do our best together.
If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:
I want to celebrate with family and friends.
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