01/06/2015:

NAME: Martijn    

AGE : 23

PAYS : Les Pays-Bas

LGMD Sous-type: LGMD 2A / Calpainopathy

À QUEL ÂGE AVEZ-VOUS ÉTÉ DIAGNOSTIQUÉ ?  Approximately around my 15th birthday.

QUELS ONT ÉTÉ VOS PREMIERS SYMPTÔMES :
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.

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD :   No.

QUELS SONT, SELON VOUS, LES PLUS GRANDS DÉFIS À RELEVER POUR VIVRE AVEC LA LGMD :
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.

QUELLE EST VOTRE PLUS GRANDE RÉALISATION :
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.

COMMENT LA LGMD VOUS A-T-ELLE INFLUENCÉ POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS ÊTES AUJOURD'HUI :
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.

QUE VOULEZ-VOUS QUE LE MONDE SACHE À PROPOS DE LA LGMD :
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 VOTRE LGMD POUVAIT ÊTRE "GUÉRIE" DEMAIN, QUELLE SERAIT LA PREMIÈRE CHOSE QUE VOUS VOUDRIEZ FAIRE :
I would want to go Sky Diving solo!