LGMD "ИНТЕРВЬЮ В ЦЕНТРЕ ВНИМАНИЯ"

Имя:  Nitesh   Возраст:   27 years old

Страна: Индия

LGMD Подтип:  LGMD (sub-type unknown)

 

В каком возрасте вам был поставлен диагноз:

I was diagnosed at the age of 10.

Каковы были ваши первые симптомы:

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

Есть ли у вас другие члены семьи, страдающие LGMD:

Нет, в моей семье только у меня LGMD.

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

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.

Какое ваше самое большое достижение:

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)

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

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.

Что вы хотите, чтобы мир узнал о LGMD:

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.

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

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.

Чтобы прочитать другие интервью "LGMD Spotlight Interviews" или стать добровольцем для участия в предстоящем интервью, посетите наш сайт: https://www.lgmd-info.org/spotlight-interviews