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Christine
Committee Member NZPN


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   Hi, I'm Christine
   I’m married and have two adult children and two gorgeous grandchildren. 
   I am a semi-retired primary school teacher.
   We live on a lifestyle block in Albany and have 21 angora goats, 2 steers, 8 chickens and a dog and a cat. 
      


My journey so far...

I was diagnosed with Pompe in 2013.  The symptoms didn’t really start to affect me until I was in my early 50’s; around 2005. Before that the main thing was the way I stood and walked. People were often asking me if I had a sore back. I was also weaker than other people, I couldn’t lift things and help when shifting furniture etc.  Around the time I turned 50 a friend and I joined a gym. We did the aerobic classes and some pump and step classes. We did that for about 3 years. When we stopped I started to notice that my legs felt heavy and I felt clumsy walking up kerbs etc. In 2009, I had a back injury and the physio I went to referred me to a back specialist. After a 6 month wait for an appointment the specialist took one look at me when I walked into his surgery and said “there is nothing wrong with your back. I am going to refer you to a neurologist”.  I saw Barry Snow who diagnosed Limb Girdle Muscular Dystrophy. He then referred me to Dr Hutchinson at Auckland hospital.  Unfortunately, I got mixed up in the Hospital Board’s system because it took nearly 2 years to get to see Dr Hutchinson. I saw a couple of other neurologists in the meantime, one queried the Limb Girdle Diagnosis and in his report, it was noted that I had a “curious gait”. After my second visit to Dr Hutchinson I was tested for Pompe.  It came back positive.

I guess I am lucky because Pompe hasn’t affected my breathing too much. I am still mobile and able to be fairly active. I do day to day relief teaching and walk our dog regularly. I go to a small local gym with a trainer who has come to a session with the hospital physio so he understands my limitations and what I need to work on.

In February this year, I was fortunate to be accepted onto the Amicus drug trial in Adelaide. It felt like winning lotto! It is early days with the trial for me. So far, I have had no side effects and I think my walking is stronger. Things are looking good.
 

Thank you for visiting us @ NZPN
  • Home
  • Our People
    • Our Patients >
      • Freda
      • Allyson
      • Christine
      • Dean
      • Samantha
      • Yakuta
      • Laurie
  • About Pompe
    • What is Pompe Disease?
    • Symptoms
    • Diagnosis
    • Treatments
    • Recommended Links
  • News and views
    • NZPN Conference 2018 Summary
    • Press Releases
    • Personal Media Stories
    • Blog
    • Allyson's Florida Blog
    • Success Stories >
      • Maryze
      • Brad
      • Monique
      • Ben
      • Brian
  • Clinical Trials
  • Air Travel
  • Donations & Fund Raising
  • Glossary
  • Accessible NZ
  • NZPN Membership
  • PHARMAC & Govt
    • Party stances on funding Rare Diseases
  • Contact us