Introducing Ashleigh

Ashleigh Bull is 18 years old. She was diagnosed with epilepsy initially at 11.5 months old.  For much of Ashleigh's life her epilepsy has been kept manageable by medication with periods of time where medication needed to be adjusted to get to a point of functionality again and to reduce the impact on Ashleigh's quality of life.  However, Ashleigh's seizures have never been fully under control with her having  from 2 - 15 seizures every night and it has always been known that the seizures could increase in frequency and more significantly, severity.  The specialist had always warned us to expect an increase with her seizures during puberty.

In October 2016 Ashleigh started the Ketogenic Diet as therapy for her epilepsy and this has helped with her quality of life, as she recovers from her seizures more quickly and they have reduced in intensity on a regular basis.  Ashleigh has been able to return to playing sport, she tried school in 2017 but she was unable to manage this in a sustainable way, and she now is able to work at Kuri where she is an assistant dog groomer. On Sat 17th of Jan she leaves for Cleveland for treatment. 

 
"The surgery can happen with the ultimate aim of Ashleigh being seizure free where she can live a full and functional life." - Fiona Ward, Ashleigh's mum.
 
For the full story click here.
 

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Latest Updates

  • PHARMAC to widen access to the exceptional circumstances process
    21 November 2019

    Patients taking lamotrigine who have concerns about the change can talk to their doctor about remaining on the current brand as PHARMAC has widened the criteria for lamotrigine exceptional circumstances.

  • PHARMAC Decision welcomed by Epilepsy New Zealand
    21 November 2019

    Epilepsy New Zealand President Dr Peter Bergin welcomes the news that Pharmac are now allowing people who have been stable on their previous brands of lamotrigine to continue taking their original brand.

  • PHARMAC waives fees to visit doctor
    21 November 2019

    If you have visited your doctor recently to seek advice on the brand changes for lamotrigine, your GP can waive the co-payment you would normally pay.

  • Tell us your experience of changing from Lamictal to Logem
    2 October 2019

    From 01 Oct 2019, Pharmac only funds the generic brand of Lamotrigine, called Logem. They no longer fund the Lamictal and Arrow brands. Tell us how it's going for you.

  • BPAC issues new guidelines for Lamotrigine
    26 September 2019

    BPAC issues new guidelines for Lamotrigine.

  • Petition against Pharmac's drug changes
    29 August 2019

    A petition is underway calling on Pharmac to reverse its decision on Lamotrigine.

  • Epilepsy NZ Position Statement - Lamotrigine
    28 August 2019

    We opposed this change from Lamictal to Logem from the start, and staff have advocated on behalf of people with epilepsy in discussions with Pharmac.

  • Introducing Ashleigh
    19 February 2018

    Ashleigh is a great young woman from Canterbury, this story is written about her epilepsy by her mother, she is heading to Cleveland for epilepsy treatment.

  • Don't Give Up by Adele Hauwai
    4 December 2017

    Adele Hauwai has shared her Living With Epilepsy story as part of the Epilepsy NZ Tell Us About It Competition. People were asked to send in their stories about epilepsy, the challenges they faced and the lessons they have learned that they would like to share with the world.

  • New ILAE Seizure Classification
    10 March 2017

    The ILAE announces the publication in Epilepsia of two new landmark classification documents, one of seizure types and one of the epilepsies.

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