02/12/2014:

NOMBRE: Lydia

Edad: 45

PAÍS: Estados Unidos

SUBTIPO LGMD: LGMD2B / Miyoshi

A QUÉ EDAD LE DIAGNOSTICARON: 41

CUÁLES FUERON SUS PRIMEROS SÍNTOMAS:
My first symptoms included: knees popping out of place, leg, foot, chest, neck, and arm pain, falling, lethargy, strange duck-waddle gait.

¿TIENE OTROS MIEMBROS DE LA FAMILIA QUE PADEZCAN ALGODISTROFIA?
No

¿CUÁLES CREE QUE SON LOS MAYORES RETOS DE VIVIR CON LA VGMD:
The progressive nature of the condition is frightening. The lethargy LGMD causes is debilitating as well. In addition to the condition, I find the lack of accessibility and social attitudes toward disabled people as very limiting.

¿CUÁL ES SU MAYOR LOGRO?
This is a hard one. Managing to work, care for small children and a mother with dementia and my elderly father (along with the assistance of my siblings), and earning a Bachelor’s of Social Work. Looking back, I am amazed that I was able to do it all.

¿CÓMO TE HA INFLUIDO LA ALGMD PARA CONVERTIRTE EN LA PERSONA QUE ERES HOY?
It has increased my empathy toward others and has been the impetus for my development of a disability consciousness.

¿QUÉ QUIERE QUE EL MUNDO SEPA SOBRE LA DGM?
Firstly, that they know about it at all. Even most medical professionals are unaware of this condition.

Secondly, it is progressive and debilitating.

Thirdly, I feel fairly safe in saying that most of us who have it would prefer otherwise, which is why research and public awareness are so vital.

Fourthly, and this is an example, recently in one of our online groups, people with my condition were discussing the five things that they would like to do if cured. Things such as holding their children and giving loved-ones hugs. This is the pernicious reality of LGMD.

SI SU ALGMD PUDIERA "CURARSE" MAÑANA, ¿QUÉ SERÍA LO PRIMERO QUE DESEARÍA HACER?
I would love to be able to go on a hike in a wooded area with my family.