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