LGMD "스포트라이트 인터뷰"

이름:  Nitesh   나이:   27 years old

국가: India

LGMD 하위 유형:  LGMD (sub-type unknown)

 

몇 살에 진단받으셨나요?:

I was diagnosed at the age of 10.

첫 증상은 무엇이었나요?:

My first symptoms included: calf muscle stiffness and pain and frequent falls along with difficulties in running and jumping.

다른 가족 중에 LGMD를 앓고 있는 사람이 있나요?

아니요, 가족 중 LGMD를 가진 사람은 저뿐입니다.

LGMD와 함께 생활하면서 가장 어려운 점은 무엇인가요?:

The greatest challenge in living with LGMD is that you have to plan and depend on others for things which normal people take for granted in their lives. For example, if you are going to restaurant or movie theatre or checking in a hotel  you need to check if the infrastructure is disabled friendly, if you are travelling you need to make sure that the personal care assistant is available, make provisions for your wheelchair battery etc.

가장 큰 성과는 무엇인가요?:

There are so many accomplishments. The fact that I am still working and is leading a happy and a wonderful life is an accomplishment itself. Despite the challenges I have been able to complete my undergraduate degree in Finance and has also completed all level of Chartered Accountancy (CA) and Chartered Financial Analyst (CFA, US)

LGMD가 지금의 자신을 만드는 데 어떤 영향을 미쳤나요?

Living with LGMD is challenging but full of teachings and experience. It is a progressive disease and in the entire journey you face several challenges of different magnitude. It had made me stronger and less worrisome. Most importantly it imparted training unconsciously to become more used to changing environment which has helped me personally adjust in various spheres. I have come a long way from being able to play cricket to a situation where now even standing is little difficult. All such experiences have taught me to stay contended and happy with whatever I am left with.

LGMD에 대해 전 세계에 알리고 싶은 내용:

According to me LGMD is not a disease but a way of life. There are numerous forms of physical disabilities where you see a lot of inspiring people are able to develop a skill such as painting with one hand or leg, finding their own unique way to lead normal life, but what’s most unique about LGMD is that it constantly changes the situation and the moment you find yourself in a comfort zone, it throws some another challenge and leaves you at a starting point again. So it’s important to treat each individual with LGMD differently and that all the solutions needs to be tailor made.

내일 LGMD가 "완치"될 수 있다면 가장 먼저 하고 싶은 일은 무엇인가요?:

I would like to go on an adventure spree, do all sort of activities such as mountaineering, paragliding, driving car or as simple as taking a long walk.

더 많은 'LGMD 스포트라이트 인터뷰'를 읽거나 다음 인터뷰에 출연을 신청하려면 다음 웹사이트를 방문하세요: https://www.lgmd-info.org/spotlight-interviews