Individuals with LGMD – Interviews

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INDIVIDUAL WITH LGMD: Eric

July 7, 2020|Individuals with LGMD - Interviews, LGMD2B|

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 LGMD.                                  What were your first symptoms: My first symptoms were, delay in speech, walking poorly, and I couldn't sit still. Do you have other family members who have LGMD: Nope, I am the only one in my family with LGMD. What do you find to be the greatest challenges in living with LGMD: There are a bunch of challenges, the [...]

INDIVIDUAL WITH LGMD: İbrahim

June 16, 2020|Individuals with LGMD - Interviews, LGMD2B|

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 feeling tired in repetitive movements.  The weakness appeared to start in my ankles. It was more in my left foot. Do you have other family members who have LGMD: No, there is no one is my family who has this same diagnosis. What do you find to be the greatest challenges in living with LGMD There was mild fatigue in [...]

INDIVIDUAL WITH LGMD: Denise

May 7, 2020|Individuals with LGMD - Interviews, LGMD2A|

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 when I was 39 years old. WHAT WERE YOUR FIRST SYMPTOMS: My initial symptoms were difficulty with running and climbing stairs. DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE LGMD: No, I am the only family member with LGMD. WHAT DO YOU FIND TO BE THE GREATEST CHALLENGES IN LIVING WITH LGMD: My greatest challenges have been losing arm strength, [...]

INDIVIDUAL WITH LGMD: Chuck

February 26, 2020|Individuals with LGMD - Interviews, LGMD2L|

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 the hospital due to a stroke the Doctors noticed that all the muscles were gone from my back and bones were protruding. Do you have other family members who have LGMD?   No, I am the only one with LGMD in my family. What do you find to be the greatest challenges in living with LGMD?  The greatest challenge is seeing [...]

INDIVIDUAL WITH LGMD: Natasha

January 12, 2020|Individuals with LGMD - Interviews, LGMD D1 DNAJB6-related, LGMD1D|

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: Our subtype is late onset so I currently have no symptoms although growing up there were small things that make more sense now that I know of my diagnosis.  Growing up, I couldn’t run as fast as my peers and I had trouble in dance getting up from the ground without using my hands, as example. Do you have other [...]

INDIVIDUAL WITH LGMD: Patrick

November 21, 2019|Individuals with LGMD - Interviews, LGMD2E|

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 first symptoms: My first symptoms were trouble running in gym class, out of breath climbing stairs, walking and running on tip-toes. Do you have other family members who have LGMD: No, I am the only person in my family with LGMD. What do you find to be the greatest challenges in living with LGMD: One of the greatest challenges is [...]

INDIVIDUAL WITH LGMD: Rosamund

November 3, 2019|Individuals with LGMD - Interviews|

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: Following a medical through work in February 2017 the doctor was concerned with my muscle function. The suggestion that it was a type of muscular dystrophy was made in January 2018 after paying to see a neurologist privately in London. What were your first symptoms: I have suffered lower back pain for as long as I can remember. I fractured [...]

Individual with LGMD: William

October 1, 2019|Individuals with LGMD - Interviews, LGMD D1 DNAJB6-related, LGMD1D|

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 later, at the age of 45, I received genetic confirmation of my LGMD 1D diagnosis. What were your first symptoms: As a child I was slow.  Around the age of 45, I experienced difficulty running. Do you have other family members who have LGMD: Yes, my brother who is 67 has LGMD1D and so does my daughter. What do you [...]

Individual with LGMD: Tasha

September 12, 2019|Individuals with LGMD - Interviews, LGMD2L, Uncategorized|

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 growing pains and then several wrong diagnoses were given.  At the age of 13, my blood levels were looked at and were off the chart. What were your first symptoms: I experienced weakness and horrible aching in both calf muscles after exercising. Do you have other family members who have LGMD: Yes, my younger brother has the same diagnosis of [...]

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 [...]

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