Pathfinders Neuromuscular Alliance aims to improve the quality of life of teenagers and adults with Muscular Dystrophy and related conditions. So what does “related conditions” mean in practice?
Membership of Pathfinders (and the Pathfinders Facebook Group) is open to people diagnosed with a muscle-weakening condition or where one’s medical team suspects that this is the case. We focus on conditions where muscle-weakness is one of the primary, most significant symptoms. This includes all the muscular dystrophies, and conditions such as mitochondrial myopathies, and we also include Spinal Muscular Atrophy and Motor Neurone Disease.
Pathfinders is a condition-specific organisation because we find that people with health conditions gain most benefit from advice and information by and for people with broadly similar needs to themselves. It allows us to target our work rather than trying to cover every condition.
We do not include conditions such as Cerebral Palsy, Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Multiple Sclerosis, Ehlers-Danlos Syndrome, channelopathies such as Cystic Fibrosis or Periodic Paralysis, Fibromyalgia, or any other condition where muscle weakness is only a small part of a much bigger list of symptoms. If you are not sure whether this includes you, or you are worried that you might have a primary muscle-weakening condition but are not clinically suspected to have one at the moment, please contact us to discuss your membership.