LGMD "焦点访谈"

名称:  Felix  年龄:  35 yrs. old

国家:  Brazil

LGMD 子类型: LGMD2A / Calpainopathy

 

您在几岁时被确诊:

我在 11 岁时被确诊。

您最初的症状是什么？:

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.

您是否有其他家庭成员患有 LGMD：

Yes, I have a sister with LGMD2A

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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.

您最大的成就是什么？:

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.

LGMD 是如何影响您成为今天的自己的？

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!

您希望世界了解 LGMD 的哪些方面？:

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!

 

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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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