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SMS Foundation UK

Supporting SMS families for a positive future

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We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).

Newly Diagnosed?

Seizures and SMS

Topic: General Health

Did you know that epilepsy is a neurological condition that affects over 50 million people worldwide? A small study1 in 2006 estimated that around 30% of people with Smith-Magenis syndrome (SMS) suffer from seizures, and 50% identified as having abnormal EEG results (most of which were epileptiform.

Seizures come in various forms, each impacting individuals differently. Commonly reported in SMS are absence seizures which typically occur in children and involve a brief loss of awareness or “spacing out.” They may involve subtle facial movements or eye blinking. Tonic-clonic seizures are also frequently described in SMS, they involve loss of consciousness, stiffening (tonic phase), followed by rhythmic jerking (clonic phase). Studies suggest that puberty, particularly in women with menstrual cycles, can be a trigger for seizures.

The unpredictability of seizures adds an extra layer of difficulty for individuals and their families. Understanding epilepsy and its connection to SMS is crucial for providing proper care and support. Let’s spread awareness, share knowledge, and support those living with epilepsy.

If you have concerns about seizures or epilepsy, don’t hesitate to reach out to The SMS Foundation. We’re here to support you whether you’re seeking guidance or simply someone to talk to.

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References

1 Goldman, A. Potocki, L. Walz, K. Lynch, J. Glaze, D. Lupski, J. and Noebels, J. (2006) ‘Topical Review: Epilepsy and Chromosomal Rearrangements in Smith-Magenis Syndrome [del(17)(p11.2p11.2)]’ Sage Journals, Journal of Child Neurology.

Topic: General Health
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Never feel isolated or alone. Call our helpline: 0300 101 0034

Please note: This is an answer phone service that will alert us as soon as a message is left. A member of the team will call you back as soon as possible – we aim to respond to messages within 48 hours.

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