Myasthenia Gravis is a very rare (one in 10,000) autoimmune neuromuscular condition that occasionally affects children. Lambert-Eaton Myasthenic Syndrome (LEMS) is at least ten times less common than MG. Congenital Myasthenia, a genetic condition that manifests at birth or in early childhood, is even rarer still (one or two in a million).
Consequently there are very few myasthenic children in the UK.
As parents, we have often struggled with the frightening path of finding a diagnosis for a seriously ill child and then with learning how best to support our children to grow and blossom into the inspirational young people that they are.
In August 2009 a group of eight families from across the UK met for the Myasthenia Gravis Association (MGA) Children’s Weekend. Families reported feeling isolated in dealing with this rare condition, and the weekend proved so beneficial that families decided to:
- - stay in touch by creating a low-cost web-based support network and information exchange;
- - to reach out to, and make links with, other families living with myasthenia;
- - and to create opportunities to meet as a group ongoing.
For more information about the support network or to get in touch with us to join our network please email email@example.com
In September 2009 the MGA gave permission for creation of the MGA National Children's Branch. The new branch officers are: