09/28/2015:

NAME:  Katsuya   AGE: 45 yrs. old

COUNTRY: Japan

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:

Yes

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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