03/06/2015:

Nome: Nikita    Età: 27 Yrs.

Paese: India

Sottotipo LGMD:  unknown

A che età è stata fatta la diagnosi:

Symptoms since I was 21Yrs

Quali sono stati i primi sintomi:

Tripping while running , tiredness on climbing for long.

Ha altri familiari affetti da LGMD?:   No

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?:

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.

Qual è il suo più grande risultato:

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!

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

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.

Cosa volete che il mondo sappia della LGMD?:

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.

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

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 😀