Myotonic Dystrophy is a genetic neuromuscular condition.
Onset can be at birth (Congenital), teenage or adult. It is a progressive condition and can and usually does affect all muscles severely, ranging from droopy eyes, speech, swallowing, fine motor, heart, gastrointestinal, bowel and mobility. The faulty gene can be passed on from either sex to either sex. If a child is born with the condition, then it is usually the mother who will have it. Invariably, this can be the first time it is diagnosed, when the child will be floppy, have respiratory problems, bilateral talipes and if severe, may not survive.
At present, there is NO treatment. The charity based in Nottingham is run by volunteers who either have it themselves or have family with myotonic dystrophy.