07/26/2016 – LGMD "Entrevista em destaque"

NOME:  Maram    IDADE: 26 years old

PAÍS: Palestine

LGMD Sub-tipo: LGMD2E

 

Com que idade foi diagnosticado:

I was diagnosed with muscular dystrophy at the age of 10.  When I was 26 years old, I received genetic confirmation of my LGMD2E diagnosis.

Quais foram os seus primeiros sintomas:

When I was 3 years old, my parents noticed that my gait was unsteady and it was difficult for me to stand up from the ground.

Tem outros familiares que sofrem de LGMD:

No, I am the only one in my family.

Quais são, na sua opinião, os maiores desafios de viver com a LGMD?:

There are so many challenges.  Simple things for many people are my greatest challenges but going to the bathroom and changing my position from side to side while sleeping make me feel so weak.

Qual é a sua maior realização:

Well, in my country people know nothing about LGMD.  I am trying every day to increase the awareness of the disease by social media.  I have helped many patients in my country and in the Arab world to the genetic test to confirm their diagnosis and to get the equipment that we need to make life a little easier for us.  I have also contacted my patients from around the world and we have become close friends.  They are my greatest accomplishments.

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

I think it has made me stronger in one way or another.  I have become more caring for the people around me. I appreciate every little blessing in my life including my great family.  I have become closer to God.  I think it changed me in a good way and I like who I am today.

O que quer que o mundo saiba sobre a LGMD:

I want them to know that we are not so different form normal people.   What happened that a simple genetic error or mutation has caused me difficulty in moving while they can.  The cause is not so complicated and if we understand that, we can find the treatment.

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

I would like to hug my parents so tightly and never let them go.  I keep thinking how hard life would be without them.

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