06/25/2015:

Nome:  Rod   Idade: 65 Yrs. Old

País: Estados Unidos

LGMD Sub-tipo: LGMD2L /  Anoctaminopathy

 

Com que idade foi diagnosticado:

I was diagnosed at the age of 49.

Quais foram os seus primeiros sintomas:

My first symptoms included difficulty going up stairs and calf weakness.

Tem outros familiares que sofrem de LGMD:

No, I am the only family member diagnosed with LGMD.

Quais são, na sua opinião, os maiores desafios de viver com a LGMD?:

The greatest challenges that my LGMD2L presents are:  1)  reduced mobility and 2) not being able to participate in sports that I love such as surfing, snow skiing and water-skiing.

Qual é a sua maior realização:

My greatest accomplishment are my two wonderful, mature and beautiful daughters!

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

Living with LGMD has shown me the way to strength, patience and empathy.

O que quer que o mundo saiba sobre a LGMD:

I want the world to know that LGMD exists and what it is.  Most people have never heard of it.

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

The first thing that I would do if my LGMD were cured tomorrow would be to go to Slick Rock country in Utah and go for a long hike…with some river fly fishing thrown in at the end!