Current situation in Glasgow
The adult muscle clinic at the Southern General Hospital has been open for 4 years and attracted 421 referrals, which 284 remain under active follow up. The figures include 37 patients with Myotonic Dystrophy of whom 16 have a ‘G’ post code.
The Scottish Muscle Service co-coordinator has ascertained a total of 331 cases in the West of Scotland by reviewing genetic, clinical and neuro-physiological databases. These individuals represent 181 pedigrees and 78 are known to have a ‘G’ post code. These numbers fall short of the estimated number of affected individuals within GGHB (112 for a population of 900,000).
It is not known how many of those patients not attending the muscle clinic remain under active follow up. The experience of geneticists and of referrals to the Muscle Clinic would suggest that some patients have had little or no follow up and that the genetic issues surrounding this diagnosis have not been discussed in the recent past taking into account relevant advances in diagnosis. Two severely affected neonates and two diagnoses of the disorder following the development of respiratory failure have occurred in the past year.
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