03/06/2015:

名称: Nikita    年龄: 27 Yrs.

国家:印度

LGMD 子类型:  unknown

您在几岁时被确诊:

Symptoms since I was 21Yrs

您最初的症状是什么？:

Tripping while running , tiredness on climbing for long.

您是否有其他家庭成员患有 LGMD:   没有

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

Currently I can walk , but I need support for climbing upstairs, also I cannot get up from ground level on my own now.  So, stairs, high slopes and getting up from flat ground are my greatest challenges currently.  But as this issue will progress, I feel my real issue will be depending on others for help.  As I am a very independent person and I resist taking help as much as I can.  My challenges will become physical and mental both.

您最大的成就是什么？:

LGMD has made me stronger in a lot of ways, mentally mostly. I now see how a few things can be done in different ways rather than the usual normal ways. I took some time to accept this change, but I think it makes me more confident and practical in life.  It was a small incident that I wouldn’t be able to forget. It was a trip with friends and they wanted to go river rafting, I wanted to ditch them as I wasn’t sure how I would get in, get out and climb up d hill. My friends pushed me hard and said a funny thing… If you drop we are 5 to pick you up, you aren’t that heavy, brought a smile to my face and I went for it. I not only did rafting, but I went down in the cold water of Ganges and had the best experience. When the rafting was over, we had a hill to climb up, I used the paddles to get up and slowly I was there. One of my friend said….. Proud of you and everyone clapped. My confidence level grew 10 times!

LGMD 是如何影响您成为今天的自己的？:

As I mentioned above, I have become more matured, strong and now I see that life is not what we always expect it to be. Things go terribly wrong and we need to put efforts to still keep moving and smiling. Be thankful for what we have and not crib about petty issues.

您希望世界了解 LGMD 的哪些方面？:

The biggest issue in my country would be lack of disable friendly zones , we are a developing nation and we do not have right amenities for handling disabilities. It’s not only the infrastructure but also the perception that people have about disabled. Generally people would sympathize and assume that we have to be dependent on someone throughout our lives. I would want that to change. I would want people to accept me for what I am and instead of sympathizing just treat me as a normal person.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

I would run a mile 😀 , climb upstairs every day and keep myself fit to not ruin my health with any other disease to come.  And yes….. Dance till I drop 😀