United States – LGMD-Info

Monkol

LGMD “SPOTLIGHT INTERVIEW” Name: Monkol AGE: 38 Country: United States LGMD Sub-Type: LGMD2G (also known as Telethoninopathy)

LGMD “Spotlight Interview” NAME: Jill AGE: 42 COUNTRY: USA LGMD Sub-Type: autosomal dominant Emery-Dreifuss muscular dystrophy (LMNA mutation/LGMD1B) AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed when I was 4 years old. WHAT WERE YOUR FIRST SYMPTOMS: I was

Karin

LGMD SPOTLIGHT INTERVIEW NAME: Karin AGE: 53 COUNTRY: United States LGMD Sub Type: Unknown AT WHAT AGE WERE YOU DIAGNOSED? I had been having problems years before my diagnosis. It wasn’t until I hit 40 that my life began to

Keisha

LGMD “Spotlight Interview” Name: Keisha Age: 31 yrs. old Country: United States LGMD Sub-Type : Unknown At what age were you diagnosed: I was diagnosed about 5 years ago at the age of 25-26. What were your first symptoms:

Amie

LGMD “SPOTLIGHT INTERVIEW” Name: Amie Age: 31 yrs old Country: United States LGMD Sub-Type: LGMD2J (Titinopathy) At what age were you diagnosed: I was just diagnosed at the age of 31 with LGMD2J – also known as Titinopathy. What

Michele

LGMD “SPOTLIGHT INTERVIEW” NAME: Michele AGE: 52 Yrs. Old COUNTRY: United States LGMD Sub-Type: LGMD2A – Calpainopathy AT WHAT AGE WERE YOU DIAGNOSED: I was initially diagnosed with an unspecified form of muscular dystrophy at the age of

Scott

LGMD “SPOTLIGHT INTERVIEW” Name: Scott Age: 48 yrs. old Country: United States LGMD Sub-Type: LGMD 2L – also known as Anoctaminopathy At what age were you diagnosed: Although my MD began about 15 years ago, I was finally diagnosed recently

Steven

LGMD Spotlight interview: Name: Steven Age: 57 yrs. old Country: United States LGMD Sub-Type : LGMD (sub-type unknown) At what age were you diagnosed: I was diagnosed at the age of 43. What were your first symptoms: Vague

Melanie

LGMD “Spotlight Interview” NAME: Melanie AGE: 33 COUNTRY: USA LGMD Sub-Type: LGMD2b (Dysferlinopathy/miyoshi myopathy) AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed one week before my 29th birthday. WHAT WERE YOU FIRST SYMPTOMS: I could not

Mary

04/08/2016 – LGMD “Spotlight Interview” NAME: Mary Age: 46 COUNTRY: United States LGMD Sub-Type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed with LGMD when I was 25 years old. What were your first symptoms: My

Janet

LGMD “SPOTLIGHT INTERVIEW” – 01/07/2016 NAME: Janet AGE: 33 yrs. old COUNTRY: United States LGMD Sub-Type: LGMD2B AT WHAT AGE WERE YOU DIAGNOSED: I was originally misdiagnosed with Polymyositis at the age of 17. Years later at the age of

Molly

11/30/2015 NAME: Molly AGE: 29 years old COUNTRY: United States LGMD Sub-Type: LGMD2B: dysferlinopathy/Miyoshi Myopathy At what age were you diagnosed: I started presenting symptoms when I was 17 and at the time I was told I was suffering

Karen

11/19/2015 Name: Karen AGE: 61 yrs. old Country: United States LGMD Sub-Type: LGMD1B / Laminopathy At what age were you diagnosed: I was diagnosed when I was 54 yrs. old. What were your first symptoms: My first symptoms included:

Mark

10/02/2015 Name: Mark Age: 54 Country: United States LGMD Sub-Type (if known): Unknown At what age were you diagnosed: Age 41. The day was January 28, 2002 What

Brad

09/30/2015: Name: Brad Age: 51 yrs. old Country: United States LGMD Sub-Type: LGMD2B/Miyoshi Myopathy At what age were you diagnosed: I first started having symptoms at 18. But it wasn’t until about 10 years later that a neurologist told

Samantha

08/07/2015: Name: Samantha AGE: 7 yrs. old COUNTRY: USA LGMD Sub-Type: LGMD2i At what age were you diagnosed: I was diagnosed at the age of 2. What were your first symptoms: My mom and dad saw me fall a

Patricia

07/29/2015: NAME: Patricia AGE: 26 yrs old COUNTRY: United States LGMD Sub-Type: LGMD2A / Calpainopathy AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with MD when I was 12 years old. WHAT WERE YOUR FIRST SYMPTOMS: First symptoms

Rod

06/25/2015: Name: Rod Age: 65 Yrs. Old Country: United States LGMD Sub-Type: LGMD2L / Anoctaminopathy At what age were you diagnosed: I was diagnosed at the age of 49. What were your first symptoms: My first symptoms included difficulty

Alicia

04/29/2015 Name: Alicia Age: 38 yrs. old Country: United States LGMD Sub-Type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed at age 35 after years & years of being misdiagnosed. What were your first symptoms:

Audrey

04/25/2015 NAME: Audrey AGE: 42 Yrs. Old COUNTRY: United States LGMD Sub-Type: LGMD2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with LGMD when I was 37. I had never heard of it before my diagnosis. WHAT WERE YOUR

Jane

04/20/2015: Name: Jane Age: 18 yrs. old Country: United Stated LGMD Sub-Type: LGMD2i At what age were you diagnosed: I was diagnosed when I was 5 years old. What were your first symptoms: I was experiencing difficult climbing stairs

Melissa

04/08/2015 NAME: Melissa AGE: 47 Yrs. Old COUNTRY: United States LGMD Sub-Type: LGMD2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed at the age of 18 WHAT WERE YOUR FIRST SYMPTOMS: As a child, I was clumsy. DO

Lacey

04/03/2015 NAME: Lacey AGE: 42 COUNTRY: United States LGMD Sub-Type: LGMD2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with Muscular Dystrophy at 16 and LGMD2i at 34. Both diagnosis’ came over the phone. In hindsight, I wish the doctors would

Jane

03/22/2015 NAME: Jane AGE: 61 COUNTRY: United States LGMD Sub-Type: unknown AT WHAT AGE WERE YOU DIAGNOSED? I was “officially” diagnosed at age 46 but I had symptoms in my late 30’s. WHAT WERE YOUR FIRST SYMPTOMS? I was the

Donavon

03/12/2015: Name: Donavon Age: 52 Country: United States LGMD Sub-Type: LGMD2D At what age were you diagnosed: I was diagnosed at the age of 16 What were your first symptoms: I was never able to run very fast and had

Julianna

03/01/2015: NAME: Julianna AGE: 24 COUNTRY: United States LGMD Sub-Type: LGMD2B AT WHAT AGE WERE YOU DIAGNOSED: I started having symptoms at the age of 16 but was not diagnosed until I was about 22 years old. WHAT WERE YOUR

Lydia

02/12/2014: NAME: Lydia Age: 45 COUNTRY: United States LGMD SUB-TYPE: LGMD2B / Miyoshi AT WHAT AGE WERE YOU DIAGNOSED: 41 WHAT WERE YOUR FIRST SYMPTOMS: My first symptoms included: knees popping out of place, leg, foot, chest, neck, and arm

Carol

01/30/2015 NAME: Carol AGE: 53 COUNTRY: United States LGMD Sub-Type: LGMD 2A / Calpainopathy AT WHAT AGE WERE YOUR DIAGNOSED: I was diagnosed with LGMD when I was 9 yrs. old but did not receive genetic confirmation of LGMD2A until

Jessica

01/18/2015: NAME: Jessica AGE: 31 COUNTRY: United States LGMD Sub-Type: LGMD2A / Calpainopathy AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with Limb Girdle Muscular Dystrophy at the age of 12, but I was not sub-typed with 2A until