Individuals with LGMD – Interviews

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INDIVIDUAL WITH LGMD: Jillena

June 12, 2019|Individuals with LGMD - Interviews, LGMD2A|

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, I received genetic confirmation of my LGMD2A subtype a couple months ago. WHAT WERE YOUR FIRST SYMPTOMS : After I had my second child, I began to notice that stairs became difficult for me. In fact, I would crawl up them. I had scoliosis so I just attributed my difficulty doing stairs to the scoliosis. But, then, I had my [...]

INDIVIDUAL WITH LGMD: Hasan

April 29, 2019|Individuals with LGMD - Interviews|

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 cramps, wadding walk, spinal curvature …. Do you have other family members who have LGMD: Yes, two sisters and one brother having this condition too What do you find to be the greatest challenges in living with LGMD: Well, loosing independent life I think is the biggest challenges in my life. The main thing is that my country places are [...]

INDIVIDUAL WITH LGMD: Tasha

April 1, 2019|Individuals with LGMD - Interviews, LGMD2B|

“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 symptoms: Earliest symptoms were when I was a toddler. As my mom would explain, I would trip on a blade of grass and fall down. We really noticed something wasn’t right when I played softball and couldn’t run right. I would lean my shoulders back, stick my stomach out, and run on my tippy toes. To this I received the [...]

INDIVIDUAL WITH LGMD: Andrea

January 15, 2019|Individuals with LGMD - Interviews, LGMD2A|

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 age 8, I could not stand with my heels on the ground and began toe walking shortly thereafter. Weakness in my shoulders and hips followed. Do you have other family members who have LGMD: No, I am the only family member diagnosed with LGMD. What do you find to be the greatest challenges in living with LGMD: Not being able [...]

INDIVIDUAL WITH LGMD: Melissa

December 11, 2018|Individuals with LGMD - Interviews, LGMD2A|

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 was 5 years old I had trouble running, had an enlarged leg muscle, would trip often and also struggled to get up from the floor. Do you have other family members who have LGMD: No, I am the only person in my family with the diagnosis of LGMD2A What do you find to be the greatest challenges in living with [...]

INDIVIDUAL WITH LGMD: Heidi

November 6, 2018|Individuals with LGMD - Interviews, LGMD2E|

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, especially my legs and then weakness. Do you have other family members who have LGMD: No one else in my family is diagnosed with LGMD. What do you find to be the greatest challenges in living with LGMD: One of my main challenges is daily pain and weakness.  When I was diagnosed, I was told that at some point I [...]

INDIVIDUAL WITH LGMD: Dan

October 8, 2018|Individuals with LGMD - Interviews, LGMD2I|

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.  I remember stepping over a roll of carpet and falling down because my leg gave out. I walked with an unusual gait. And, I was not able to do one sit up without grabbing my legs to pull myself up. Do you have other family members who have LGMD: No, I am the only one in my family with LGMD. [...]

INDIVIDUAL WITH LGMD: Nicole

September 29, 2018|Individuals with LGMD - Interviews, LGMD2A|

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 were tippy toe walking. Do you have other family members who have LGMD: No one else in my family has LGMD. What do you find to be the greatest challenges in living with LGMD: As of lately, one of my biggest challenges is maintaining energy and stamina throughout the day. I have also been having difficulty dealing with the ever-changing [...]

Individual with LGMD: Rodrigo

September 24, 2018|Individuals with LGMD - Interviews, LGMD2B|

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 symptoms appeared around the age of 17. Do you have other family members who have LGMD: I have 2 brothers who show symptoms but have not been diagnosed. What do you find to be the greatest challenges in living with LGMD: Mobility is my greatest challenge. What is your greatest accomplishment: My greatest accomplishment is in allowing my artistic talent [...]

INDIVIDUAL WITH LGMD: Aric

September 18, 2018|Individuals with LGMD - Interviews, LGMD2B|

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 being able to climb stairs or stand on my tip toes. Do you have other family members who have LGMD: I do not. What do you find to be the greatest challenges in living with LGMD: In my normal day, I have trouble walking up stairs and getting out of my car --  things that most people would never think [...]

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