LGMD2D

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ORGANIZATION: Stichting Spierkracht

October 26, 2020|LGMD Organization - Interviews, LGMD2D, ORGANIZATION|

LGMD ORGANIZATION:      Stichting Spierkracht WEBSITE:   www.stichtingSpierKracht.com FACEBOOK:        https://www.facebook.com/stichtingspierkracht.nl INSTAGRAM:     https://www.instagram.com/stichting_spierkracht WHAT LGMD SUB-TYPE DOES YOUR ORGANIZATION FOCUSES ON:  We focus on LGMD2D / R3 Alpha Sarcoglycan-related IF YOU FOCUS ON A SUB-TYPE, IS THERE A REGISTRY AND HOW CAN PATIENTS JOIN? We advise all LGMD2D patients to register: https://lgmd2d.org/patient-resources/register/. It is very important to have a DNA confirmed diagnosis. If your mutation is not confirmed, it can impact your medical treatment. Is your organization a Non-Profit? If so, what type:         Yes, we are a non-profit organization based in the Netherlands.  We only have volunteers and no overhead. WHAT [...]

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: Sabrina

August 27, 2015|Individuals with LGMD - Interviews, LGMD2D|

08/27/2015 Name:    Sabrina      AGE: 32 COUNTRY:  Bangladesh LGMD Sub-Type:  LGMD 2D   At what age were you diagnosed : At the age of 9 years old, I was diagnosed. What were your first symptoms : I was falling frequently and had difficulty with climbing stairs and running. Do you have other family members who have LGMD: Yeah! My younger sister also has LGMD.   What do you find to be the greatest challenges in living with LGMD: Living with LGMD the first challenges for me were social and infrastructure barriers. Like because of Inaccessibility in our country I could not [...]

INDIVIDUAL WITH LGMD: Donavon

March 12, 2015|Individuals with LGMD - Interviews, LGMD2D|

03/12/2015: Name: Donavon  Age: 52 Country: United States LGMD Sub-Type: LGMD2D At what age were you diagnosed: I was diagnosed at the age of 16 What were your first symptoms: I was never able to run very fast and had problems running up stairs. We lived on a farm part of the time and when it came to doing chores I wasn't able to lift a full bag of feed. Do you have other family members who have LGMD: Yes, I have four sisters and two nieces with LGMD. What do you find to be the greatest challenges in living [...]

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