02/12/2014:

NOM: Lydia

L'âge: 45

PAYS: États-Unis

SOUS-TYPE LGMD: LGMD2B / Miyoshi

À QUEL ÂGE AVEZ-VOUS ÉTÉ DIAGNOSTIQUÉ ? 41

QUELS ONT ÉTÉ VOS PREMIERS SYMPTÔMES :
My first symptoms included: knees popping out of place, leg, foot, chest, neck, and arm pain, falling, lethargy, strange duck-waddle gait.

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD :
Non

QUELS SONT, SELON VOUS, LES PLUS GRANDS DÉFIS À RELEVER POUR VIVRE AVEC LA LGMD :
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.

QUELLE EST VOTRE PLUS GRANDE RÉALISATION :
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.

COMMENT LA LGMD VOUS A-T-ELLE INFLUENCÉ POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS ÊTES AUJOURD'HUI :
It has increased my empathy toward others and has been the impetus for my development of a disability consciousness.

QUE VOULEZ-VOUS QUE LE MONDE SACHE À PROPOS DE LA LGMD :
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 VOTRE LGMD POUVAIT ÊTRE "GUÉRIE" DEMAIN, QUELLE SERAIT LA PREMIÈRE CHOSE QUE VOUS VOUDRIEZ FAIRE :
I would love to be able to go on a hike in a wooded area with my family.