01/06/2015:

NAME: Martijn    

EDAD: 23

PAÍS: Países Bajos

Subtipo LGMD: LGMD 2A / Calpainopathy

A QUÉ EDAD LE DIAGNOSTICARON:  Approximately around my 15th birthday.

CUÁLES FUERON SUS PRIMEROS SÍNTOMAS:
The first symptoms were visible since I was a baby. I used to creep like a crab and I was physically ‘different’ from my peers. I was active in a number of different sports, such as: gymnastics, volleyball, judo and tennis. But my performance was declining due to the on-going progression of muscle weakness in my body.

¿TIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?   No.

¿CUÁLES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LA VGMD:
The more practical problems are worse to me. For example walking by my own on the street with crooked sidewalk tiles is quite challenging. It requires a lot of attention and I get tired of this. In most cases I decide to use a wheelchair if I have to walk long distances. Also, explaining my muscle disease to strangers is not my favorite hobby. I am a little bit unsure on how much information I should provide. Some of them are asking about the ‘whole process’ and the more personal things. And some others feel frightened to ask me about any details. Talking about my disease is not a problem for me, but determining how much information to share is the challenge.

¿CUÁL ES SU MAYOR LOGRO?
Do you have a few seconds? One of my greatest accomplishes are skydiving, studying and doing everything that healthy people consider as ‘not possible’ for disabled people. I do like to cross the borders in my live. I am always looking for adventures, like traveling with friends (actually we scheduled a trip to Iceland in February 2015) and so on. Besides that, a personal accomplishment to me is a presentation about my muscle disease and the way I am dealing with the disease to about 500 medical students.

¿CÓMO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?
LGMD has influenced my life for sure! It has made me more mature in many ways. The way I handle problems and enjoy my life has significantly changed since my diagnosis.

¿QUÉ QUIERE QUE EL MUNDO SEPA SOBRE LA DGM?
People with LGMD or any other muscular disease are not different from healthy people, they just may need a little assistance, at times. Also, do not talk to the person behind the wheelchair, but speak directly to the person in the wheelchair.

SI SU ALGMD PUDIERA "CURARSE" MAÑANA, ¿QUÉ SERÍA LO PRIMERO QUE DESEARÍA HACER?
I would want to go Sky Diving solo!