LGMD “Spotlight Interview” NAME: Lisa AGE: 50 COUNTRY: United States of America LGMD SUB-TYPE: UNKNOWN AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with LGMD when I was 45 after decades of misdiagnosis WHAT WERE YOUR
INDIVIDUAL WITH LGMD: Lisa
INDIVIDUAL WITH LGMD – Saira
Name: Saira Age: 29 Country: Indian living in the UAE LGMD Sub-Type (if known): LGMD 2B/R2 Dysferlin-related At what age were you diagnosed: I was diagnosed at the age of 16. I got the genetic confirmation in February 2020.
INDIVIDUAL WITH LGMD: Neil
Name: Neil Kramer Age: 50 Country: United States of America LGMD Sub-Type: Unknown At what age were you diagnosed: I was diagnosed at the age of 47. What were your first symptoms: I started having weakness in my legs,
INDIVIDUAL WITH LGMD: Kaya
LGMD “SPOTLIGHT INTERVIEW” Name: Kaya Age: 18 yrs. old Country: Holland LGMD Sub-Type: LGMD 2D/ R3 Alpha Sarcoglycan-related At what age were you diagnosed: I believe that must have been around my third birthday though I cannot say that I
INDIVIDUAL WITH LGMD: Tatyana
LGMD “SPOTLIGHT INTERVIEW” Name: Tatyana Age: 33 yrs. old Country: Russia LGMD Sub-Type: LGMD 2A / R1 Calpain3-related At what age were you diagnosed: I was diagnosed with an unknown subtype of LGMD at 14-15. When I was 27 or
INDIVIDUAL WITH LGMD: Dylan
LGMD “Spotlight interview” Name: Dylan Age: 28 years old Country: United States of America LGMD Sub-Type: LGMD 2J / R10 Titin-related At what age were you diagnosed: I was diagnosed at the age of 23. What were your first symptoms:
INDIVIDUAL WITH LGMD: Eric
LGMD “SPOTLIGHT INTERVIEW” Name: Eric Age: 23 yrs. old Country: USA LGMD Sub-Type: LGMD 2B/R2 Dysferlin-related At what age were you diagnosed: When I was two, I was misdiagnosed with Muscle Myopothy. Two decades later, I was accurately diagnosed with
INDIVIDUAL WITH LGMD: İbrahim
LGMD “SPOTLIGHT INTERVIEW” Name: İbrahim Age: 55 yrs. old Country: Turkey LGMD Sub-Type: LGMD 2B/R2 Dysferlin-related At what age were you diagnosed: I was diagnosed at the age of 25. What were your first symptoms: At first, I was
INDIVIDUAL WITH LGMD: Denise
LGMD “Spotlight Interview” NAME: Denise AGE: 49 COUNTRY: New Zealand LGMD SUB-TYPE: LGMD 2A/R1 Calpain3-related AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed with LGMD when I was 18 years and received a confirmed diagnosis of LGMD 2A/R1
INDIVIDUAL WITH LGMD: Chuck
LGMD “Spotlight Interview” Name: Chuck Age: 63 years old Country: Canada LGMD Sub-Type: LGMD 2L/R12 Anoctamin5-related At what age were you diagnosed? I was diagnosed at the age of 50. What were your first SYMPTOMS? When I went into
INDIVIDUAL WITH LGMD: Natasha
LGMD “SPOTLIGHT INTERVIEW” Name: Natasha Age: 25 years old Country: United States LGMD Sub-Type: LGMD D1 DNAJB6-related (Formerly LGMD type 1D) At what age were you diagnosed: I was diagnosed at the age of 23. What were your first symptoms:
INDIVIDUAL WITH LGMD: Patrick
LGMD “SPOTLIGHT INTERVIEW” NAME: Patrick AGE: 46 yrs. old COUNTRY: USA LGMD Sub-Type: LGMD 2E/R4 Bèta-sarcoglycan-related At what age were you diagnosed: I was 12, and the year was 1985. Initially, I was diagnosed Becker Muscular Dystrophy! What were your
INDIVIDUAL WITH LGMD: Rosamund
LGMD “SPOTLIGHT INTERVIEW” Name: Rosamund Age: 43 years old Country: England UK LGMD Sub-Type: Not known; I am still going through the tests with the John Walton Muscular Dystrophy Research Centre in Newcastle UK. At what age were you diagnosed:
Individual with LGMD: William
LGMD “Spotlight interview” Name: William Age: 62 years old Country: United States LGMD Sub-Type: LGMD D1 DNAJB6-related (Formerly LGMD type 1D) At what age were you diagnosed: I was clinically diagnosed at the age of 40 and then 5 years
Individual with LGMD: Tasha
LGMD “SPOTLIGHT INTERVIEW” Name: Tasha Age: 46 Country: United States LGMD Sub-Type: LGMD2L At what age were you diagnosed: I was diagnosed at the age of 13 but had problems since about the age of 8. They said it was
INDIVIDUAL WITH LGMD: Jillena
LGMD “Spotlight interview” Name: Jillena Age: 32 yrs. old Country: United States LGMD Sub-Type: LGMD2A – a form of Calpainopathy AT WHAT AGE WERE YOU DIAGNOSED : I was initially diagnosed with LGMD at the age of 21. And then,
INDIVIDUAL WITH LGMD: Hasan
LGMD “SPOTLIGHT INTERVIEW” Name: Hasan AGE: 34 years old Country: Pakistan LGMD Sub-Type: Unknown At what age were you diagnosed: I was diagnosed at the age of 19 years old What were your first symptoms: Started feeling pain and
INDIVIDUAL WITH LGMD: Tasha
“LGMD Spotlight Interview” Name: Tasha Age: 27 Country: United States LGMD Sub-Type: LGMD2B At what age were you diagnosed: I was diagnosed at age 12. I was a 6th grader at that time in elementary school. What were your first
INDIVIDUAL WITH LGMD: Andrea
LGMD “SPOTLIGHT INTERVIEW” Name: Andrea Age: 24 yrs. old Country: United States LGMD Sub-Type: LGMD2A – a form of Calpainopathy At what age were you diagnosed: I was diagnosed at the age of 11. What were your first symptoms: At
INDIVIDUAL WITH LGMD: Melissa
LGMD “SPOTLIGHT INTERVIEW” Name: Melissa Age: 32 yrs. old Country: United States LGMD Sub-Type: LGMD2A (A form of Calpainopathy) At what age were you diagnosed: I was diagnosed at the age of 26. What were your first symptoms: When I
INDIVIDUAL WITH LGMD: Heidi
LGMD “Spotlight Interview” Name: Heidi Age: 50 years old Country: United States LGMD Sub-Type: LGMD2E At what age were you diagnosed: I was diagnosed at the age of 33. What were your first symptoms: I was often stiff and sore,
INDIVIDUAL WITH LGMD: Dan
LGMD “Spotlight interview” Name: Dan Age: 40 Yrs. Old Country: United States LGMD Sub-Type: LGMD2i At what age were you diagnosed: I was diagnosed at the age of 30. What were your first symptoms: My first symptom was leg weakness.
INDIVIDUAL WITH LGMD: Nicole
LGMD “Spotlight interview” Name: Nicole Age: 24 yrs. old Country: United States LGMD Sub-Type: LGMD 2A / Calpainopathy At what age were you diagnosed: I was diagnosed around 12 years old. What were your first symptoms: My very first symptoms
Individual with LGMD: Rodrigo
LGMD “SPOTLIGHT INTERVIEW” Name: Rodrigo Age: 29 yrs. old Country: United States LGMD Sub-Type: LGMD2B / Myoshi Myopathy At what age were you diagnosed: I was diagnosed with LGMD2B at the age of 24. What were your first symptoms: My
INDIVIDUAL WITH LGMD: Aric
LGMD “Spotlight Interview” Name: Aric Age: 22 yrs. old Country: United States LGMD Sub-Type: LGMD2B At what age were you diagnosed: I was diagnosed at the age of 21. What were your first symptoms: My first symptoms were not
INDIVIDUAL WITH LGMD: Mackenzie
LGMD “Spotlight Interview” NAME: Mackenzie AGE: 22 yrs. old Country: USA LGMD Sub-Type: Unknown AT WHAT AGE WERE YOU DIAGNOSED: I was just diagnosed last year at the age of 21. WHAT WERE YOUR FIRST SYMPTOMS: My first symptoms included
INDIVIDUAL WITH LGMD: Mandine
LGMD “SPOTLIGHT INTERVIEW” Name: Mandine Age: 31 Country: France LGMD Sub-Type: LGMD2A / Calpainopathy At what age were you diagnosed: I was diagnosed with at the age of 8 years and then received confirmation that is was
INDIVIDUAL WITH LGMD: Majed
LGMD “SPOTLIGHT INTERVIEW” Name: Majed Age: 20 Country: Syria / Germany LGMD Sub-type: LGMD2C AT WHAT AGE WERE YOU DIAGNOSED: I was diagnosed at age 8. WHAT WERE YOUR FIRST SYMPTOMS: The symptoms began to appear when I
INDIVIDUAL WITH LGMD: Anne
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
INDIVIDUAL WITH LGMD: 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
INDIVIDUAL WITH LGMD: 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
INDIVIDUAL WITH LGMD: 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
INDIVIDUAL WITH LGMD: Aleksandra
LGMD “Spotlight Interview” – A Mother’s Perspective Mother’s Name: Aleksandra Country: The Netherlands Son’s LGMD Sub-Type: LGMD2D
INDIVIDUAL WITH LGMD: Younis
NAME: Younis AGE: 14 yrs. old COUNTRY: Syria LGMD SUB-TYPE: LGMD 2C
INDIVIDUAL WITH LGMD: Jill
LGMD Spotlight Interview Name: Jill Age: 33 yrs. old Country: United States LGMD Sub-Type: LGMD2i
INDIVIDUAL WITH LGMD: Deceena
LGMD “Spotlight Interview” Name: Deceena Age: 31 yrs. old Country: USA LGMD Sub-Type: LGMD2A – also known as Calpainopathy
INDIVIDUAL WITH LGMD: Fred
LGMD “SPOTLIGHT INTERVIEW” Name: Fred Age: 36 yrs. old Country: United States LGMD Sub-Type: LGMD2A / Calpainopathy
INDIVIDUAL WITH LGMD: Vicki
LGMD “SPOTLIGHT INTERVIEW” Name: Vicki Age: 44 yrs. old Country: Canada LGMD Sub-Type: LGMD2A / Calpainopathy
INDIVIDUAL WITH LGMD: Kourtney
LGMD “SPOTLIGHT INTERVIEW” Name: Kourtney Age: 23 yrs. old Country: USA LGMD Sub-Type: LGMD2B / Miyoshi Myopathy
INDIVIDUAL WITH LGMD: Becky
LGMD “Spotlight Interview” Name: Becky Age: 35 yrs. old Country: USA LGMD Sub-Type: LGMD2B
INDIVIDUAL WITH LGMD: Lori
LGMD “SPOTLIGHT INTERVIEW” Name: Lori Age: 47 yrs. old Country: United States LGMD Sub-Type: LGMD2i
INDIVIDUAL WITH LGMD: Hillary
LGMD “SPOTLIGHT INTERVIEW” NAME: Hillary AGE: 32 yrs. old COUNTRY: USA LGMD Sub-Type: LGMD2A / Calpainopathy
INDIVIDUAL WITH LGMD: Monkol
LGMD “SPOTLIGHT INTERVIEW” Name: Monkol AGE: 38 Country: United States LGMD Sub-Type: LGMD2G (also known as Telethoninopathy)
INDIVIDUAL WITH LGMD: Karen
LGMD “Spotlight Interview” Name: Karen Age: 54 Yrs. old Country: USA LGMD Sub-Type: LGMD 2I
INDIVIDUAL WITH LGMD: Felix
LGMD “SPOTLIGHT INTERVIEW” Name: Felix Age: 35 yrs. old Country: Brazil LGMD Sub-Type: LGMD2A / Calpainopathy
INDIVIDUAL WITH LGMD: Asher
LGMD “ Spotlight Interview” Name: Asher Age: 10 yrs. old Country: New Zealand LGMD Sub-Type: Unknown
INDIVIDUAL WITH LGMD: Ben
LGMD “SPOTLIGHT INTERVIEW” Name: Ben Age: 23 yrs. old Country: Hong Kong LGMD Sub-Type: LGMD2A / Calpainopathy
INDIVIDUAL WITH LGMD: Nicole
Name: Nicole AGE: 37 COUNTRY: United States LGMD Sub-Type: LGMD 2J (Titinopathy)
INDIVIDUAL WITH LGMD: Ralph
Name: Ralph Age: 24 yrs. old Country: South Africa LGMD Sub-Type: LGMD2B
INDIVIDUAL WITH LGMD: Amanda
LGMD SPOTLIGHT INTERVIEW Name: Amanda Age: 34 Country: Canada LGMD Sub-Type: LGMD2C