Individuals with LGMD – Interviews

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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 [...]

INDIVIDUAL WITH LGMD: Jasmine

June 8, 2021|Individuals with LGMD - Interviews, LGMD2A|

Name: Jasmine Age: 24 years old Country: USA LGMD Sub-Type: LGMD 2A/R1 calpain 3-related At what age were you diagnosed? I was just recently diagnosed at the age of 24. What were your first symptoms? Toe walking was my first symptom. I’ve noticed weakness since I was a little girl. I remember in elementary school that when it was my turn to play basketball against the other team it took me forever to get up from the floor to run down to the other side of the court. I was using my hands on my knees to stand up. [...]

INDIVIDUAL WITH LGMD:  Maria

May 17, 2021|Individuals with LGMD - Interviews, LGMD1B|

  Name: Maria Age: 29 years old Country: USA LGMD Sub-Type: LGMD 1B   At what age were you diagnosed: Initially, I was diagnosed at age two with SMA. I was then re-diagnosed at age 15 with limb-girdle muscular dystrophy. What were your first symptoms: My parents said I didn’t walk until 17 months. I also walked with a waddle and was using my arms to help me get up from a sitting position as a toddler. Do you have other family members who have LGMD: No, I am the only person in my family with LGMD. What do [...]

INDIVIDUAL WITH LGMD: Kae

March 3, 2021|Individuals with LGMD - Interviews, LGMD2B|

Name: Kae            Age: 29 yrs. old Country: Canada LGMD Sub-Type: LGMD 2B/R2 Dysferlin-related / Miyoshi Myopathy At what age were you diagnosed? I was diagnosed with LGMD when I was 17 years old. What were your first Symptoms? Not being able to walk on my tippy-toes, jump high, climb 2 steps at a time, or run as fast starting around age 14. Do you have other family members who have LGMD? Yes, my older brother also has LGMD. What do you find to be the greatest challenges in living with LGMD? The greatest challenges [...]

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