Want to know more about Limb Girdle Muscular Dystrophy or LAMA2-MD?
Limb Girdle Muscular Dystrophy (LGMD) refers to a group of approximately 30 different muscular diseases.
Lanah's disease is caused by a mutation in the LAMA2 gene.
Unfortunately, it is a very rare progressive and genetic muscle disease.
Worldwide, the frequency is estimated at approximately 1/30,000–100,000 persons.
Children diagnosed with Lama2-MD experience reduced muscle tone and weakness, and most are unable to walk independently and also have problems with gross and fine motor skills. They may develop problems with their respiratory and swallowing muscles, requiring support for breathing, especially at night, and lose weight due to eating problems.
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Infections are therefore very dangerous, and in the worst cases, patients do not survive beyond childhood. Motor function remains stable for most children during childhood, but the lack of muscle strength combined with physical growth leads to contractures or an abnormal curvature of the spine (scoliosis) in many cases.
(source: voorsara.nl )
Would you like to know more about this muscle disease or the gene mutation?
Then be sure to visit the websites mentioned below.
Donate? Wonderful thought and action!
For more information about the collective name and LGMD, click on the links below:
Key Partners of Lanah
Foundation For Sara
The VoorSara Foundation is an international patient organization for the rare muscle disease LAMA2-MD.
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They are one of the few organizations that fund research and work closely with experts to improve care for patients with LAMA2-MD.
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They also bring together fellow patients, doctors, and researchers at family days and scientific conferences.
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Go to: VoorSara
Muscles for Muscles
They invest our funds in a targeted manner and believe in the power of collaboration.
They create meaningful connections between people, resources and possibilities. All to get the most out of it for the approximately 20,000 children with a muscular disease.
Go to Spierenvoorspieren
Princess Beatrix Muscle Fund
This Muscle Fund finances, directs and stimulates scientific research into muscular diseases.
Go to Spierfonds
Opkikker Foundation
Hendrikscare Hippocampe
Hendriks Care: a wide range of products and items that make life a lot easier for your child or loved one.
From self-balancing wheelchairs to hand bikes, beautiful and practical products that allow you to go outside, that you want to be seen with, and that provide convenience and comfort.
Go to Hendrikscare
Offers customised solutions and specialises in building and integrating all kinds of complex aids on wheelchairs for hand and arm support.
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Go to Website
E-move wheels custom made