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<p>The support and care given to this group of people includes a range of treatments
and supportive measures, including: anti-epileptic medication; physiotherapy; treatment
for spasticity; and treatment for dystonia (including bracing and wheelchairs). Progressive
feeding problems require speech and language management and gastrostomy insertion.
Pain management is required for end of life care.</p><p> </p><p>Given the wide range
of treatments and supportive measures, it is not possible to estimate the average
annual cost of treating an individual with a Neuronal Ceroid Lipofuscinosis disease,
especially since some of these costs will fall to NHS England and some to clinical
commissioning groups.</p><p> </p><p>It is estimated that there are between 45 and
90 people undergoing care and treatment for all Neuronal Ceroid Lipofuscinosis diseases
of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.</p>
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