LGMD "INTERVISTA SPOTLIGHT"

Nome:  Tasha              Età: 46

Paese: Stati Uniti

Sottotipo LGMD: LGMD2L

A che età è stata fatta la diagnosi:

I was diagnosed at the age of 13 but had problems since about the age of 8.  They said it was growing pains and then several wrong diagnoses were given.  At the age of 13, my blood levels were looked at and were off the chart.

Quali sono stati i primi sintomi:

I experienced weakness and horrible aching in both calf muscles after exercising.

Avete altri familiari affetti da LGMD:

Yes, my younger brother has the same diagnosis of LGMD2L.  He has had a totally different progression and level of muscle atrophy.  My older sister does not have it.  Both of my parents were carriers.

Quali sono, secondo lei, le maggiori sfide nel vivere con la LGMD:

My greatest challenges with this disease are tiredness and pain.  And, people not understanding.

Qual è il suo più grande risultato:

Continuing on every day, working and exercising.

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

Depends!  It has gotten me to be an advocate for myself and health.  I was told to be in a wheelchair by adulthood, if not sooner.  I was also told to plan my career accordingly.  Then I was told to stop all of my sports and activities.  As a 13-year-old, this had profound effects on my childhood, as I was heavily involved in sports and was really good at them – especially soccer.  So as not to drive myself crazy, I ignored the doctor’s advice and did it anyway.  I played soccer through college and after.  I believe it helped me overall with my attitude and physical well-being.  I often hurt and had difficulties walking afterward, but I think overall it helped me stay healthy and kept my muscles active.  I still exercise and do outdoors activities, but have a longer recovery time.  I am an accountant and I feel that is partly due to my abilities.  I believe LGMD has made me a stronger person overall.

Cosa volete che il mondo sappia della LGMD?:

First that although awareness has been brought to the forefront,  mostly about Duchenne MD, it was primarily because of the Jerry Lewis Telethons each year.  There are many other forms of muscular dystrophy that people like I have….that also need research.  People are suffering and there is NO CURE!  Also, with LGMD, I have noticed that it is not always apparent that people have a disability.  Meaning….I look totally normal but have several problems people do not recognize.  Since I am not in a wheelchair, some people think I am just faking it.  I cannot do stairs at all anymore and have had to turn down many job opportunities because there was no elevator.

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

I would tell the world…..

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