Neurofibromatosis Awareness Day - Scottish Parliament: 17th May 2017
S5M-04137 Ash Denham: Neurofibromatosis Awareness Day—That the Parliament
appreciates that 17 May 2017 is Neurofibromatosis Awareness Day; notes that neurofibromatosis
(NF) is a genetic disorder that causes tumours to grow on the nerves and that tumours can
develop anywhere in the nervous system, including the brain, spinal cord and nerves; further notes
that there is no known cure for the condition, which people are born with due to a genetic
mutation; recognises that, while 1 in 3,000 people are currently diagnosed with the condition,
many go undiagnosed due to a lack of awareness; considers that, despite NF being one of the
most common genetic disorders, people, including many parents, often find themselves telling
GPs what their condition or that of their children is; notes that NF is a progressive condition and
can cause a variety of problems, including physical and learning difficulties and mental health
issues, and is also linked to autism; appreciates that people have concerns that, due to lack of
awareness, those affected may not receive the correct treatment in time, and notes hopes that
across all UK NHS boards, including NHS Lothian, NF patients will receive regular routine
monitoring by specialists, in memory of the incredibly determined, Beth Beattie, who sadly passed
away on 4 November 2016, aged four-years-old.
Published by the Scottish Parliament Corporate Body.
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