Living with Pallister-Hall Syndrome (PHS) and Gelastic Seizures

As well being an abuse victim survivor campaigner and a patient, mentor, counsellor and advocate, George (irrespective of his own adversity) has the courage, fortitude and empathy to put himself out there and talk about personal things, experiences and situations that some might find embarrassing.

Driven with passion and by purpose George is a confident, energetic, enthusiastic and passionate award winning presenter who speaks plainly and tells it as it is.

He is recognised by many prominent genetic support organisations in Australia as the authority on his medical conditions.

Unashamedly he boasts, “I once thought of myself as an ‘oddity’, but I am really a ‘rarity’ – and proud of it!”

George has given many lectures, written a number of books, articles and missives published in Australia and around-the-world. As a professional genealogist he was engaged by Warner Bros. International Television Production Australia to consult on the WDYTYA? Australian Television Series episode of Dr Karl Kruszelnicki.

He is the founder, creator, administrator, public face and voice of a number online support groups which provide advice, information, materials and resources to patients, their parents, carers, advocates, medicos, allied healthcare workers and specialists around-the-world:

Pallister-Hall Syndrome (PHS) Support Hub
  / pallister.hall.syndrome  

Gelastic Seizure Support Hub
  / gelastic.seizures  

Albeit living in Queensland, George is Blue Card accredited and available to present on the following topics:

● Pallister-Hall Syndrome (PHS)
● Gelastic Seizures.
● Hypothalamic Hamartomas.
● Living with a genetic disorder.
● Bullying.
● Life Stages - Lived Experiences!
● We're ALL Different!
● Genetic Disorders are Indiscriminate!
● Genetic Disorders are Like Turning Wheels; You Never What the Next Bump Will be?
● An Ignorance of Hidden Disabilities!
● Assumptions, Misconceptions .... the Realities of having a Genetic Disorder!
● Becoming Self-Aware of One's Condition!
● A Co-ordinating Specialist is a Must!
● Genetic Disorders are Progressive with Age!
● Being Different Doesn't Mean I am Useless!


As part of the Genetic Support Network of Victoria's Lived Experience Interview Podcast Series, patient, mentor, counsellor and advocate George Helon of Toowoomba (QLD) talks with our Project Facilitator Kari Klein about Pallister-Hall Syndrome (PHS) and Gelastic Seizures.

The purpose of the series is to explore the impact of genetic conditions across a range of life stages – from the patient’s perspective – so that people might better understand the concerns, and appreciate the realities of a patient’s development and experiences as they get older.

George Helon is the founder and administrator of both the Facebook:

Pallister-Hall Syndrome (PHS) Support Hub
  / pallister.hall.syndrome  

Gelastic Seizure Support Hub
  / gelastic.seizures  

DISCLAIMER: The words, views and opinions expressed in this podcast are personal, those of the interviewee/author, and should not be viewed as a reflection of the views and opinions of the GSNV, its staff, or committee.

The interviewee/author accepts all responsibility for the content herewith.

A transcript can be found here: https://georgehelon.com/files/George_...