LGMD “Spotlight Interview” Name: Anne Age: 56 yrs. old Country: United States LGMD Sub-Type: LGMD2A – also known as Calpainopathy At what age were you diagnosed: For having Muscular Dystrophy, I was diagnosed around 4 years of age. The specific
Anne
Anamaria
LGMD “SPOTLIGHT INTERVIEW’ NAME: Anamaria AGE: 25 years old COUNTRY: Romania LGMD Sub-type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed this year by the genetic testing of ”whole exome sequencing”. What were your
Zia
LGMD SPOTLIGHT INTERVIEW Name: Zia Age: 26 Country: Australia LGMD Sub-Type: Limb-Girdle Muscular Dystrophy type 2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with Muscular Dystrophy at the age of two. After many tests and doctor visits, I
Ralph
LGMD “SPOTLIGHT INTERVIEW” Name: Ralph AGE: 58 Yrs. Old Country: United States LGMD Sub-Type: LGMD2L / Anoctaminopathy At what age were you diagnosed: I started having symptoms at age 47, back in 2006 and was diagnosed by 2011 when
Aleksandra
LGMD “Spotlight Interview” – A Mother’s Perspective Mother’s Name: Aleksandra Country: The Netherlands Son’s LGMD Sub-Type: LGMD2D
Younis
NAME: Younis AGE: 14 yrs. old COUNTRY: Syria LGMD SUB-TYPE: LGMD 2C
Jill
LGMD Spotlight Interview Name: Jill Age: 33 yrs. old Country: United States LGMD Sub-Type: LGMD2i
Deceena
LGMD “Spotlight Interview” Name: Deceena Age: 31 yrs. old Country: USA LGMD Sub-Type: LGMD2A – also known as Calpainopathy
Fred
LGMD “SPOTLIGHT INTERVIEW” Name: Fred Age: 36 yrs. old Country: United States LGMD Sub-Type: LGMD2A / Calpainopathy
Vicki
LGMD “SPOTLIGHT INTERVIEW” Name: Vicki Age: 44 yrs. old Country: Canada LGMD Sub-Type: LGMD2A / Calpainopathy
Kourtney
LGMD “SPOTLIGHT INTERVIEW” Name: Kourtney Age: 23 yrs. old Country: USA LGMD Sub-Type: LGMD2B / Miyoshi Myopathy
Becky
LGMD “Spotlight Interview” Name: Becky Age: 35 yrs. old Country: USA LGMD Sub-Type: LGMD2B
Lori
LGMD “SPOTLIGHT INTERVIEW” Name: Lori Age: 47 yrs. old Country: United States LGMD Sub-Type: LGMD2i
Hillary
LGMD “SPOTLIGHT INTERVIEW” NAME: Hillary AGE: 32 yrs. old COUNTRY: USA LGMD Sub-Type: LGMD2A / Calpainopathy
Monkol
LGMD “SPOTLIGHT INTERVIEW” Name: Monkol AGE: 38 Country: United States LGMD Sub-Type: LGMD2G (also known as Telethoninopathy)
Karen
LGMD “Spotlight Interview” Name: Karen Age: 54 Yrs. old Country: USA LGMD Sub-Type: LGMD 2I
Felix
LGMD “SPOTLIGHT INTERVIEW” Name: Felix Age: 35 yrs. old Country: Brazil LGMD Sub-Type: LGMD2A / Calpainopathy
Asher
LGMD “ Spotlight Interview” Name: Asher Age: 10 yrs. old Country: New Zealand LGMD Sub-Type: Unknown
Ben
LGMD “SPOTLIGHT INTERVIEW” Name: Ben Age: 23 yrs. old Country: Hong Kong LGMD Sub-Type: LGMD2A / Calpainopathy
Nicole
Name: Nicole AGE: 37 COUNTRY: United States LGMD Sub-Type: LGMD 2J (Titinopathy)
Ralph
Name: Ralph Age: 24 yrs. old Country: South Africa LGMD Sub-Type: LGMD2B
Amanda
LGMD SPOTLIGHT INTERVIEW Name: Amanda Age: 34 Country: Canada LGMD Sub-Type: LGMD2C
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
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
Darlene
LGMD “SPOTLIGHT INTERVIEW” Name: Darlene Age: 65 yrs. old Country: United States LGMD Sub-Type: Non-Dysferlin Miyoshi Myopathy At what age were you diagnosed: I was diagnosed at the age of 64. What were your first symptoms: In retrospect,
Cecilia
LGMD Spotlight Interview Name: Cecilia AGE: 36 years Country: Argentina LGMD Sub-Type: LGMD2A/Calpainopathy At what age were you diagnosed? I was diagnosed when I was 12 years old. What were your first symptoms: I began walking on my toes.
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:
Andrea
LGMD “SPOTLIGHT INTERVIEW” Name: Andrea Age: 42 yrs. old Country: United States LGMD Sub-Type: Collagen 6 Congenital MD (Intermediate on the spectrum between Bethlem and Ullrich CMD) AT WHAT AGE WERE YOU DIAGNOSED: I was first diagnosed at age 6
Brenda
LGMD “Spotlight Interview” Name: Brenda Age: 55 yrs. old Country: United States LGMD Sub-Type: LGMD2A – also known as Calpainopathy At what age were you diagnosed: I was diagnosed when I was 50 years old. What were your first
Adriana
LGMD “Spotlight Interview” Name: Adriana Age: 48 years old Country: Argentina LGMD Sub-Type: LGMD2B WHAT AGE WERE YOU DIAGNOSED: I was diagnosed at the age 20. WHAT WERE YOUR FIRST SYMPTOMS: My first symptoms included: difficulty climbing stairs, tiredness,
Nitesh
LGMD “SPOTLIGHT INTERVIEW” Name: Nitesh Age: 27 years old Country: India LGMD Sub-Type: LGMD (sub-type unknown) At what age were you diagnosed: I was diagnosed at the age of 10. What were your first symptoms: My first symptoms included:
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
Anna
LGMD SPOTLIGHT INTERVIEW Name: Anna Age: 36 yrs. old Country: Canada LGMD Sub-Type: LGMD2I At what age were you diagnosed: I was initially diagnosed with a “non- specific muscle myopathy when I was a young child (sometime in grade
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
Kelci
LGMD “Spotlight interview” Name: Kelci Age: 23 yrs. old Country: Australia LGMD Sub-Type (if known): LGMD2J – Titinopathy At what age were you diagnosed: I was just recently diagnosed at the age of 23. What were your first symptoms:
Tony
LGMD “Spotlight Interview” Name: Tony Age: 32 Country: United States LGMD Sub-Type: LGMD2i AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with LGMD around the age of 26 at the Cleveland Clinic and then officially diagnosed with 2i
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 – 09/02/2016 Name: Melanie Age: 29 yrs. old Country: Germany LGMD Sub-Type : LGMD2i (heterozygous type) At what age were you diagnosed: I was diagnosed at the age of 4 by having a muscle biopsy. What
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
Maram
07/26/2016 – LGMD “Spotlight Interview” NAME: Maram AGE: 26 years old COUNTRY: Palestine LGMD Sub-Type: LGMD2E At what age were you diagnosed: I was diagnosed with muscular dystrophy at the age of 10. When I was 26 years old, I
Jonathan
LGMD “SPOTLIGHT INTERVIEW 07/10/2016 Name: Jonathan Age: 54 yrs. old Country : England LGMD Sub-Type : Not known AT WHAT AGE WERE YOU DIAGNOSED? Initially when I was 11 (1973), I was diagnosed with Congenital Muscular Myopathy. No further action
Donna-Marie
06/24/2016 LGMD “Spotlight Interview” Name: Donna-Marie Age: 32 yrs. old Country: United Kingdom LGMD Sub-Type: LGMD2i At what age were you diagnosed: I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the
Dave
05/14/2016: LGMD “Spotlight Interview” Name: Dave Age: 27 yrs. old Country: Australia LGMD Sub-Type: LGMD 2A / Calpainopathy At what age were you diagnosed: I think I was diagnosed around the age of 14. I know that it was
Rebecca
04/30/2016 LGMD “Spotlight Interview” NAME: Rebecca AGE: 29 years old COUNTRY: Australia LGMD Sub-Type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed with LGMD2A when I was 26 years old. What were your first
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
Emily
03/28/2016 LGMD “SPOTLIGHT INTERVIEW” Name: Emily Age: 29 yrs. old Country: United Kingdom LGMD Sub-Type: LGMD2B At what age were you diagnosed: I received confirmation of my LGMD2B diagnosis at the age 28 but at the age of 24
Niliwan
LGMD “SPOTLIGHT INTERVIEW” – 02/18/2016 Name: Niluwan Age: 25 years. Country: Sri Lanka LGMD Sub-Type: Unkown At what age were you DIAGNOSED? I was diagnosed when I was 13 years old. What were your first SYMPTOMS?
Thomas
01/30/2016 LGMD “Spotlight interview” Name: Thomas AGE: 31 COUNTRY: Switzerland LGMD Sub-Type: LGMD 2B / Miyoshi Myopathy At what age were you diagnosed: My first diagnosis (biopsy) was at 28, followed by the proof with genetic test one year
Laurence
“LGMD SPOTLIGHT INTERVIEW” – 01/18/2016 Name: Laurence Age: 49 Country: France LGMD Sub-Type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed at the age of 42. What were your first symptoms: The symptoms that I