LGMD "ИНТЕРВЬЮ В ЦЕНТРЕ ВНИМАНИЯ"

Имя:  Felix  Возраст:  35 yrs. old

Страна:  Brazil

LGMD Подтип: LGMD2A / Calpainopathy

 

В каком возрасте вам был поставлен диагноз:

Диагноз мне поставили в 11 лет.

Каковы были ваши первые симптомы:

My first symptoms included: falls, tiredness, walking on my tip toes.  Plus, I could not keep up with other people my age in physical activities.

Есть ли у вас другие члены семьи, страдающие LGMD:

Yes, I have a sister with LGMD2A

Что, по вашему мнению, является наибольшей проблемой в жизни с LGMD:

The biggest challenge was having to adapt to the changes of my body, developing forms of defense against probable falls, tactics when going up and down stairs, care not to tread lightly on some obstacles, and always seeking a chair for support – especially when getting up from a chair and the floor.   I am always trying to be careful of anything that could bring me down.

Какое ваше самое большое достижение:

I learned to play the guitar!  This was a great challenge because the difficulty was enormous – especially when holding the instrument and making the movement with my arms to play the strings of the guitar.  This can be very tiring but still, I can do it.

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня:

Life with LGMD has taught me and teaches me today to fight and to give more value to life.  Surviving in such a difficult world takes a lot of effort and it makes me a better person especially when dealing with others.  There are situations in which we live that only those who share in the same struggle actually know and understand.  There is a purpose of God in all the lives of this world.  I think LGMD may have given me a feeling in life, the biggest challenge I could have.  We are opponents, and like every good fight, I intend to fight to the end – winning, of course!

Что вы хотите, чтобы мир узнал о LGMD:

The world needs to know about LGMD, as the people are living with this disease.  It is important to be aware of how to help the cause.  Knowing that does not make us better or worse than other people who have physical limitations.  And hopefully, in the near future, the world will know the greatest of all news – – that there is a cure for this disease!

 

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь:

If I was cured tomorrow, I would glorify the name of God. I would do things like play football as well as climb stairs and sit and stand up without help from anyone.  It is these simple day to day activities that most people do not really give much attention but are dreams to those of us in wheelchairs.  A cure will be an epic victory, one that will be read in history books.

 

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