LGMD "INTERVISTA SPOTLIGHT"

Nome:  Nitesh   Età:   27 years old

Paese: India

Sottotipo LGMD:  LGMD (sub-type unknown)

 

A che età è stata fatta la diagnosi:

I was diagnosed at the age of 10.

Quali sono stati i primi sintomi:

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

Avete altri familiari affetti da LGMD:

No, sono l'unica in famiglia con la LGMD.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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.

Qual è il suo più grande risultato:

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)

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

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.

Cosa volete che il mondo sappia della 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.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

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.

Per leggere altre "interviste LGMD Spotlight" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web: https://www.lgmd-info.org/spotlight-interviews