11/19/2015

Name:  Karen   AGE: 61 yrs. old

Land: Vereinigte Staaten

LGMD Unter-Typ: LGMD1B / Laminopathy

 

In welchem Alter wurde bei Ihnen die Diagnose gestellt?:

I was diagnosed when I was 54 yrs. old.

Was waren Ihre ersten Symptome?:

My first symptoms included:  falling, inability to climb stairs and difficulty lifting.

Haben Sie andere Familienmitglieder, die LGMD haben?

My sister, her son and his daughter,  her daughter, and a brother all have the same diagnosis.  There have been 2 that were also tested and do not have it.  LGMD1B has an autosomal dominant inheritance pattern which means that typically this disease appears in every generation without skips.

Was sind für Sie die größten Herausforderungen im Leben mit LGMD?:

The greatest challenges for me include:  getting around, being able to get up when I sit, bathroom problems, lifting, being able to reach items, loading walker in car alone, walking, shopping, and getting dressed.

Was ist Ihre größte Errungenschaft?:

For me, my greatest accomplishments include raising my kids and working with school children for 18 years.

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?

It makes me more sympathetic to others and their issues.  I am feeling blessed to have family members around.  I  appreciate what I have left.

Was möchten Sie der Welt über LGMD mitteilen?

Not all disabilities are immediately visible. Some of us might not look like anything is wrong and yet people judge us. I get plenty of stares when I park in a handicap parking space. I get the look…until I have to get a cart to even walk.    I wish that more people knew how to help us –  when we fall, etc.

It is frustrating that a lot of people do not know and understand the difference between MD and MS.  I say I have MD and they still say MS.

Wenn Ihre LGMD morgen "geheilt" werden könnte, was würden Sie als Erstes tun wollen?:

I would want to be able to hold as well as sit down and play with my granddaughter.

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