Individuals with LGMD – Interviews

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INDIVIDUAL WITH LGMD: Buck

May 9, 2022|Individuals with LGMD - Interviews, LGMD2L|

  Name:       Buck Age:           31 years old Country:   Unites States of America LGMD Sub-Type:  LGMD 2L / R12   At what age were you diagnosed? I was diagnosed at the age of 28. What were your first SYMPTOMS? My initials symptoms included weakness and pain in my legs, difficulty climbing stairs and it was hard to stand up from the ground. Do you have other family members who have LGMD? I do not have any known relatives that have been diagnosed with LGMD. What do you find to be the greatest challenges in living with LGMD? Chronic pain is [...]

INDIVIDUAL WITH LGMD: Yasemin

April 5, 2022|Individuals with LGMD - Interviews, LGMD2A|

LGMD: “Spotlight Interview” Name: Yasemin Age: 4 years old Country: The Netherlands LGMD Sub-Type: LGMD 2A/R1 calpain 3-related At what age were you diagnosed? Our daughter was diagnosed at the age of 2. What were your first SYMPTOMS? She doesn’t have any symptoms yet. Because of the fact she grows very slowly, they did some testing at the hospital and discovered that she has very high CK levels. After further testing, they found out that she has LGMD 2A/R1. Do you have other family members who have LGMD? No one else in our family has LGMD. What do you [...]

INDIVIDUAL WITH LGMD: John

February 8, 2022|Individuals with LGMD - Interviews, LGMD2J|

Name:      John                  Age:   28 yrs. old Country:   United States LGMD Sub-Type:    LGMD 2J/R10 titin-related   At what age were you diagnosed? At the age of 10, I was diagnosed with Becker’s MD.  Around the age of 11 or 12, I was then diagnosed with Mitochondrial myopathy.  In 2016 I was then diagnosed with LGMD and LGMD2J/R10 was finally genetically confirmed in 2021. What were your first SYMPTOMS? I had difficulty walking properly around the age of 5.  I was experiencing tremendous calf pain when exercising and I had difficulty keeping up with other kids. Do you have other family [...]

INDIVIDUAL WITH LGMD: Sophia

January 7, 2022|Individuals with LGMD - Interviews, LGMD2A|

LGMD “Spotlight Interview” Name:  Sophia Age:  8 Country:  USA LGMD Sub-Type:  LGMD 2A/R1 calpain 3-related   At what age were you diagnosed? I was officially diagnosed at age 6 from genetic blood testing. What were your first symptoms? I had pneumonia when I was 4.5 and my mom brought me for blood work because I was sick for a long time. My liver enzyme levels were very high so the doctors started to look for a reason why. I also started walking on my toes. I was in and out of lots of hospitals and misdiagnosed for 1.5 years. It [...]

INDIVIDUAL WITH LGMD: Soralla

December 12, 2021|Individuals with LGMD - Interviews, LGMD2B|

LGMD “Spotlight Interview” Name: Soralla Age: 28 Country: United States LGMD Sub-Type:  LGMD 2A/R1 calpain 3-related   At what age were you diagnosed? I was diagnosed at age 23. What were your first symptoms? My symptoms at the beginning were light weakness from my lower body, it was hard to go up the stairs as fast as I was used to, or getting up from the floor especially when we would sit in the quad in Physical education class. Keep in mind these symptoms started in the 11th grade of high school. Yet I was not diagnosed until I was [...]

INDIVIDUAL WITH LGMD: Osman

November 7, 2021|Individuals with LGMD - Interviews, LGMD2D|

LGMD “SPOTLIGHT INTERVIEW” Name:  Osman Age:  30 yrs. old Country:  Turkey LGMD Sub-Type:  LGMD2D/R3 Alpha sarcoglycan-related   At what age were you diagnosed? I was diagnosed at the age of 16. What were your first symptoms? Symptoms started showing around the age of seventeen. I felt the need to rest after a bit of running. I was tired while climbing stairs.  After a few years, I started to hold on while climbing stairs or getting up from a seated position.  At the age of 25, I started not being able to lean forward and started to walk slowly so as [...]

INDIVIDUAL WITH LGMD: Jade

October 17, 2021|Individuals with LGMD - Interviews, LGMD2A|

LGMD "SPOTLIGHT INTERVIEW" Name:    Jade Age:  20 years old Country:  United States LGMD Sub-Type:  LGMD 2A/R1 calpain 3-related   At what age were you diagnosed? I was officially diagnosed in March 2021, so this is all still new to me. What were your first SYMPTOMS? The first time I noticed symptoms, I thought I was just dehydrated.  I felt weak, my legs like jello, and pain in my hips.  Now that I am aware of my diagnosis, I can look back and see symptoms from as early as the age of 12.  I played softball and couldn’t make my [...]

INDIVIDUAL WITH LGMD: Sanjana

September 20, 2021|Individuals with LGMD - Interviews, LGMD2A|

LGMD "SPOTLIGHT INTERVIEW" Name:        Sanjana Age:  55 yrs. old Country:  India LGMD Sub-Type:  LGMD2A/R1 Calpain 3 - related   At what age were you diagnosed? I was diagnosed at the age of 13. What were your first SYMPTOMS? Symptoms started showing around the age of five. I would toe walk while climbing stairs or walking uphill. I needed knee support while getting up from a seated position. I would balance on my toes while sitting in a squatting position. Do you have other family members who have LGMD? Yes, my two elder brothers also have been diagnosed with LGMD2A/R1. [...]

INDIVIDUAL WITH LGMD: Cyanne

September 2, 2021|Individuals with LGMD - Interviews, LGMD2I|

LGMD “Spotlight Interview” Name:  Cyanne Age:  29 Country:  South Australia LGMD Sub-Type:  LGMD Type 2i / R9 Dystroglycan-related   At what age were you diagnosed? I was diagnosed with muscular dystrophy when I was just 2 years old. It wasn’t until I was 21 that I found out I had LGMD Type 2i. Or R9 now as the name has been changed. What were your first symptoms? The very first symptom my mum noticed was that I could not hold my head up when I was in a baby walker. Plus, I was not crawling when others my age were. [...]

INDIVIDUAL WITH LGMD: Lena

July 11, 2021|Individuals with LGMD - Interviews, LGMD2J|

Name:         Lena              Age:  44 Country:  USA LGMD Sub-Type:  Limb-Girdle Muscular Dystrophy type 2J/R10 Titan-related   At what age were you diagnosed? I was diagnosed at age 42. What were your first symptoms? As a preschool teacher, I noticed that it was becoming very difficult to get up from the floor. Then I started falling and losing my balance. Do you have other family members who have LGMD? My sister and I both have been diagnosed with LGMD subtype 2J, we also think that our father and all our uncles could have had it. (They are all deceased and were [...]

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