Individuals with LGMD – Interviews

Home/Individuals with LGMD - Interviews

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 [...]

INDIVIDUAL WITH LGMD: Lisa

January 3, 2021|Individuals with LGMD - Interviews|

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 FIRST SYMPTOMS: My initial symptoms were stiff and numb feeling muscles. But I was an athlete so normal strength test didn’t show weakness. Breathing and cardio were always a struggle too DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: My sister and nephew have same mutation but extremely mild symptoms so far ( younger).  Kids are being tested [...]

INDIVIDUAL WITH LGMD – Saira

December 3, 2020|Individuals with LGMD - Interviews, LGMD2B|

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. What were your first symptoms: Falling all of a sudden and getting up from sitting down on the ground were the first symptoms. Do you have other family members who have LGMD: No, none of my family members have LGMD. I am the only one diagnosed with LGMD. What do you find to be the greatest challenges in living [...]

INDIVIDUAL WITH LGMD: Neil

November 15, 2020|Individuals with LGMD - Interviews|

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, which resulted in frequent falls. I noticed gradually having trouble with balancing, getting up from chairs, climbing stairs, and knees giving out causing falls. One day, 4 years ago, I had a bad fall and went to the emergency room. The doctor recommended I see a neurologist. During my first visit, the doctor informed me that the issues were [...]

INDIVIDUAL WITH LGMD: Kaya

September 15, 2020|Individuals with LGMD - Interviews, LGMD2D|

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 remember much of that. We where really early on the diagnosis. What were your first symptoms: I was born pretty much simultaneously with my sister and my first symptom manifested when I started to crawl, my sister who is healthy crawled like a normal infant would whereas I crawled in a weird manner with one leg in front of the [...]

INDIVIDUAL WITH LGMD: Tatyana

September 4, 2020|Individuals with LGMD - Interviews, LGMD2A|

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 28, my diagnosis was confirmed genetically. What were your first symptoms: My first symptoms were difficulty with running, climbing stairs and also I never could do pull-ups. Do you have other family members who have LGMD: No, I’m the only one with LGMD in my family. What do you find to be the greatest challenges in living with LGMD: Acceptance [...]

Go to Top