10/16/2016

NOME:  Annette               IDADE: 40-50 yrs old

PAÍS:  Ireland

LGMD Sub-tipo:   LGMD2B

 

Com que idade foi diagnosticado:

I was diagnosed at the age of 38 yrs. old

Quais foram os seus primeiros sintomas:

I was stumbling and falling.  I also had problems rising from a seated position and climbing stairs.

Tem outros familiares que sofrem de LGMD:

No, I am the only person in my family with this diagnosis.

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

Lack of awareness is prevalent.  In addition, many facilities in Dublin (transport, restaurants, some theaters) are not anywhere near wheelchair accessible.

LGMD has impacted my professional life as I am no longer able to work full time and there have been financial consequences of this.

Qual é a sua maior realização:

I try to remain positive and optimistic.  I am fortunate that I am able to maintain an almost independent life. I am delighted to be taking part in a clinical outcome study in Newcastle, UK (the people there are wonderful).

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

I appreciate what I can do and try not to get downhearted regarding the things that are no longer possible.

O que quer que o mundo saiba sobre a LGMD:

I am blessed with a wonderful family and core group of friends who never let me down.

LGMD is a challenge but with a good support system in place, life can be good.  Greater funding allocations are imperative in order for LGMD to be treated and not be a life altering condition.

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

I would play with my beloved niece Emily, bring her to the park and do all the things a good auntie should do.

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