Bruce
Welcome!
I was diagnosed with Type 2 Late-Onset Pompe in September 2011 at age 46.
This was not too much of a shock really as my Twin Sister (Allyson) also has Pompe.
One does wonder how many twins have been diagnosed with Pompe or are we number one and two in the world????
This episode in my life started 5th September 2011, so will keep you updated with progress as we go.
It is frustrating to know that at present our "Government and Their Drug Agency Pharmac" have seen fit not to fund treatment for Late Onset Pompe.
I was diagnosed with Type 2 Late-Onset Pompe in September 2011 at age 46.
This was not too much of a shock really as my Twin Sister (Allyson) also has Pompe.
One does wonder how many twins have been diagnosed with Pompe or are we number one and two in the world????
This episode in my life started 5th September 2011, so will keep you updated with progress as we go.
It is frustrating to know that at present our "Government and Their Drug Agency Pharmac" have seen fit not to fund treatment for Late Onset Pompe.
About me...
Living In Sunny Napier, Married To Julie, We have two sons, Steven and Nicholas.
We lead quite a busy life.
We own a Pet Shop in Napier CBD "Deco City Pets",
Own A Telecommunications Company "Celcom Solutions Ltd"
And work part time at "The National Aquarium Of New Zealand"
And in my spare time spend a little bit of time roaming the fairways of Maraenui Golf Club. Some people would say that I spend more time there than anywhere else ;-)
Meetings...
19/09/2011
I have a meeting with our local MP (Chris Tremain) on Monday 19th September.
I had asked for this meeting before I was diagnosed, this was and is with the aim to find out what the Government can and will do for the people of NZ who fall outside of the Pharmac Funded Treatments.
I have a meeting with our local MP (Chris Tremain) on Monday 19th September.
I had asked for this meeting before I was diagnosed, this was and is with the aim to find out what the Government can and will do for the people of NZ who fall outside of the Pharmac Funded Treatments.
