INDIVIDUAL WITH LGMD: Eva

03/31/2015

Name:  Eva    Age: 33 Yrs. OldUnknown - Eva

Country:  Kenya

LGMD Sub-Type :  Unknown

À QUEL ÂGE AVEZ-VOUS ÉTÉ DIAGNOSTIQUÉ ? 

J'ai été diagnostiquée à l'âge de 14 ans.

QUELS ONT ÉTÉ LES PREMIERS SYMPTÔMES ?:

I had difficulty running fast and raising my hand up with ease. I was never able also to bend and sweep the floor properly when it came to doing house chores.

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD ?:

No. I am the only one with muscular dystrophy in our family.

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

My muscles are getting weaker by the day and that means my level of dependency is also increasing. It’s hard for me to keep a personal caregiver because most of them do not have the heart, they start complaining just weeks after being employed. I am grateful for the support I get from my husband and relatives who show up to keep my house clean and assist in any way possible.

QUELLE EST VOTRE PLUS GRANDE RÉALISATION ?:

Getting married and starting a family with my husband,  Creating awareness about Muscular Dystrophy in Kenya. Many people are now aware of the condition and are glad to have started because I have met more people in the country with the same condition through Muscular Dystrophy Awareness of Kenya and hoping still to do more.

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

Because of  LGMD I think I have to plan my days in advance, I cannot just wake up in the morning and say, today am going out simply because transport has to be arranged, I must have an escort e.t.c. I am also very optimistic of the future and my life is influenced much with my Christian beliefs.

QUE VOULEZ-VOUS QUE LE MONDE SACHE À PROPOS DE LA LGMD :

A diagnosis of LGMD  is not a death sentence, you can live your life to the fullest doing what you can at the time. LGMD weakens your muscles but it shouldn’t weaken your spirit. People living with LGMD can work and employers should not shy away from employing us. With the research work going on, plus the trials a cure for muscular dystrophy is in the horizon, I hope it gets here sooner.  

SI VOTRE LGMD POUVAIT ÊTRE "GUÉRIE" DEMAIN, QUELLE SERAIT LA PREMIÈRE CHOSE QUE VOUS VOUDRIEZ FAIRE :
I would kneel down, raise my hands towards heaven and worship my God.