Introduction to MDI

Muscular Dystrophy Ireland (MDI) is a voluntary organization which was established in 1972 by a small group of people in the west of Ireland to support families who had a member with muscular dystrophy. Since then it has grown considerably and it now has a membership of over 700 members and a network of branches throughout Ireland.

There are now MDI offices in Cork, Dublin, Galway, Letterkenny, Mullingar and Kells, and MDI staff members are also based in the Mid-West (Clare), North West (Donegal) and South East (Kilkenny) regions.

MDI’s primary objective is to provide support for people and their families who are living with muscular dystrophy and allied neuromuscular condition.

What is muscular dystrophy?

Muscular dystrophy is the collective name for a range of neuromuscular conditions, which are characterized by the progressive weakening and wasting of the muscles. It can affect adults and children. Some forms arise at birth or in childhood, others may not manifest themselves until later in life. Each type of muscular dystrophy arises from a different genetic mutation or deletion which is inherited from one or both parents, or is due to a spontaneous mutation. This means that there are many families who have more than one member with the condition. There is no cure for muscular dystrophy but there have been huge advances in increasing the quality of life for people with the condition and scientists around the world are working hard to develop new treatments.

The conditions listed here are covered by MDI. If you are in any doubt over whether MDI covers the condition you or someone you know has, please do not hesitate to contact MDI’s Information Officer, by emailing info@mdi.ie or phoning (01) 6236414

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1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy - General
  • • MDC1A (merosin-deficient congenital muscular dystrophy)
  • • Rigid spine syndrome (RSS)
  • • Ullrich congenital muscular dystrophies
  • • Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositides

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD) - General
  • • LGMD 1B (also known as Laminopathy)
  • • LGMD 1C (also known as Caveolinopathy)
  • • LGMD 2A (also known as Calpainopathy)
  • • LGMD 2B (also known as Dysferlinopathy)
  • • LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

12. Other (Please Specify)

13. Unspecified