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MDI Update on Support and Advocacy

March 20th, 2020

 

Dear All

We hope you and your loved ones are all keeping safe and well. We want to let you know that MDI is working hard behind the scenes to advocate on behalf of our members throughout this crisis.

MDI is a member of the Disability Federation of Ireland and we are letting them know the concerns and issues of our members to bring to the HSE National Stakeholder Committee on the Coronavirus. We are also linking in with the Neurological Association of Ireland who will represent our issues on the Clinical Advisory Group to the Neurology Clinical Programme as they develop a protocol in relation to keeping neurology services operational during the coming period.

We are also keeping in regular contact with medical specialists to ensure that our members are informed of any developments. We encourage you to continue to visit the HSE page https://www2.hse.ie/coronavirus/ and other state websites regularly for up-to-date information and advice. Currently, the guidelines for people with neuromuscular conditions remain the same as those issued by the HSE.

Our Family Support Workers and Youth Workers are proactively offering support on the phone and by text, email and teleconferencing. Our back of office staff are working hard to keep the organisation running smoothly.

We are here to support you if you have any queries,
Please contact mdiinfo@mdi.ie

Take care everyone.

On behalf of the MDI Team

 

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Categories: Uncategorized

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