Petrea King – Supporting Masto on the Gold Coast  

Petrea King, Founding Director and CEO of the Quest for Life Foundation at Bundanoon on the south coast of New South Wales, was an inspiring speaker at our conference this year.  Petrea is a qualified naturopath, herbalist, homoeopath, yoga and meditation teacher and counsellor.  In 1983, at the age of 32, she was diagnosed with acute myeloid leukaemia and came to accept the prospect of death.  Unexpectedly, however, she survived, and in 1990, she established the Quest for Life Foundation, and since then has dedicated herself to encouraging, empowering and educating people living with cancer, neurological and other serious and chronic illnesses, or who are suffering grief, stress or trauma – and for their carers.  She has received numerous awards for her work, has written eight books, including three children’s books, and has recorded a dozen meditation CDs.  She is a regular guest on ABC national and local radio and has been featured in many television programs.

In her calm, honest and compassionate manner, Petrea told us about the many traumas she has experienced in her life, and how her search for inner peace, as she faced death, taught her the fundamentals of how to live.  She led us through some practical strategies for living well in difficult circumstances and for building emotional resilience and a sense of wellbeing.

In particular, she outlined the four qualities which provide a framework to understand peace of mind and how it can be a living presence in our lives.  Petrea emphasised that the presence of these four qualities is always found in people who have spontaneous remissions or who far outlive their doctor’s predictions.  These qualities are not just a state of mind but a state of physiology – one that is positively conducive to physical healing and creating wellness. Each quality begins with the letter ‘c’, and they are known collectively as the Four Cs:

  1. The first necessary quality is that we have a sense of control over our responses to life.
  2. The second quality is to feel committed to living – to be willing to get emotionally up-to-date with our life and take responsibility for our perceptions – stop blaming or resisting what is.
  3. The third quality is that we feel challenged and excited by life. Can we find meaning in our suffering? If we are willing, we have the opportunity to listen to the voice of our spirit and respect its wisdom.
  4. The final quality is a sense of connectedness – feeling that we are loved and supported by those with whom we share our life, and having a sense of belonging or place.

There is so much more to be shared from our meeting with Petrea, but I hope that this is an introduction to another way of viewing our situation.  Her knowledge regarding the neuroscience of emotion and physiology is highly relevant to our experiences of symptoms of Mastocytosis, and also provided us with strategies to minimise the harmful effects of some of our symptoms through mindful meditation.  Meditation and mindfulness are important factors in allowing us to live more in the present moment.

Feedback was very positive from those who attended the session, and there were many questions afterwards.  It would be wonderful to have Petrea’s presence at a future conference, as it provides a balance to medical input and offers ways to nurture our mind, body and spirit in the midst of significant ill health and uncertainty.

Get more information regarding Petrea’s work at the Quest for Life Foundation, and to access books and CDs.    

Sue Dickinson – TAMS Support Group Chair

Posted in mastocytosis, Support

Tick-induced Allergies Awareness Week launch

 

David Mayne, with Janelle Williams

TAMS Chair, David Mayne, with Janelle Williams, President of TiARA (Tick Induced Allergy Research and Awareness) at Parliament House Sydney today.

TAMS was invited to attend the TiARA NSW Parliament House Morning Tea hosted by The Honourable Anthony Roberts MA (Comms), Member of the Legislative Assembly.

The morning tea launched the inaugural Tick-induced Allergies Awareness Week and the Allergen and Chef’s Cards for MMA (1) (Mammalian Meat Allergy) sufferers.

TAMS was invited as the similarities are amazing with symptoms and treatment.

Posted in allergy, mastocytosis

Petrea King to speak at Conference

Fabulous news – Petrea King, Founding Director and CEO of the Quest for Life Foundation has been confirmed as our Sunday morning speaker at the 2016 TAMS Mini Conference.

Your Life Matters with Petrea King, Founding Director and CEO of the Quest for Life Foundation

An unexpected diagnosis can stop us in our tracks and cause us to consider how best to embrace the health challenge we face. Sometimes we might look great, but our inner reality doesn’t match our outer appearance. It can be a lonesome and isolating experience when everyone comments on our outer appearance without any enquiry about our inner state.

The greatest gift you can give yourself, your family or your community is the gift of your own good physical, mental, emotional and spiritual wellbeing. There are many practical skills and strategies for living well in difficult circumstances and for building your emotional resilience and sense of wellbeing.

  • Coming to our senses
  • Mindfulness as a foundation of happiness
  • You’re not your body, you have a body!

About Petrea King

Petrea King - Helen Coetzee credit -300PXPetrea King is a qualified naturopath, herbalist, homoeopath, yoga and meditation teacher and counsellor.  After her recovery from acute myeloid leukaemia, Petrea founded the Quest for Life Foundation in 1990, which is situated in Bundanoon, New South Wales, and since then has dedicated herself to encouraging, empowering and educating people living with cancer, neurological and other serious illnesses, or who are suffering from grief, stress or trauma – and for their carers.  She is the bestselling author of eight books, including Quest for Life and Your Life Matters.  She has written three children’s books – You, Me and the Rainbow, Rainbow Kids and The Rainbow Garden. She has recorded a dozen meditation CDs, including the Rainbow Connection CD for children.

Petrea has received many awards for her work, including the Advance Australia Award, the Centenary Medal, Citizen of the Year for 2008 and has been amongst the nominees for Australian of the Year since 2003.  She is a regular guest on ABC national and local radio and has been featured in many television programs.

Buy your tickets online today!

Posted in Uncategorized

Tickets on sale for the 2016 TAMS Mini Conference

The TAMS 2016 Mini Conference draft program and online booking form are now available on the conference page on our website, along with information about our main speakers and program events.

Date: Saturday, 17 September – Sunday, 18 September 2016

Location: Mantra Legend Hotel Surfers Paradise, Queensland

Book online today to attend the 2016 TAMS Mini Conference, to be held in sunny Queensland in September. We are thrilled to announce that our speakers include:

  • Petrea King, Founding Director and CEO of the Quest for Life Foundation;
  • Dr Celia Zubrinich, Allergist; and
  • Dr Velencia Soutter, Paediatrician Allergist.

We look forward to seeing you in the sunshine.

Posted in Conference

Participants wanted

THE ROYAL MELBOURNE HOSPITAL IS CALLING FOR PARTICIPANTS

Do you have Systemic or Cutaneous Mastocytosis and have Significant Symptoms?

A new trial has started at The Royal Melbourne Hospital using Omalizumab, a medication used by people with asthma

The study asks:

Can the mast cells in people with mastocytosis also be controlled by Omalizumab?

This project has been approved by the Melbourne Health Human Research Ethics Committee (Study Number: 2013.026) Participation in this study is voluntary. Any information we gain in the course of the study will be protected as confidential and anonymous.

FURTHER INFORMATION CAN BE OBTAINED FROM THE DEPARTMENT BY CONTACTING
CLINICAL TRIAL NURSE – STEWART DUNCUM ON 03 9342 3901

Posted in mastocytosis Tagged with:

Dr Theo Theoharides

FANTASTIC NEWS !!!!
Dr Theo Theoharides is coming to the Sydney TAMS conference.

Dr Theo 2Few have not heard of one of the world’s leading researchers into mast cell disease, who will now be presenting at the 2015 TAMS conference in Sydney Australia. Dr Theo Theoharides will be in Sydney for the entire conference presenting at least twice and also chairing sufferers / care givers forums.
Please ensure that you book your calendar for May 1st to 3rd for the 4th annual TAMS conference to be held at the Hyde Park Inn, Sydney. Registration forms online soon.

Prof. Theoharis Theoharides (Dr. Theo), MS, PhD, MD, FAAAAI, is Professor of Pharmacology, Internal Medicine and Biochemistry and Director of the Molecular Immunopharmacology and Drug Discovery Laboratory at Tufts University School of Medicine has over 20 years of research into mast cells and brain inflammation, 300 published papers, and many patents.

Dr Theo

Dr. Theo, as he is affectionately called, has shown that mast cells are one of the master regulators of the immune system, directing immune system response and controlling inflammation. Dysfunction of mast cell has being found to be the source of many auto-immune diseases and conditions and his research is providing new targets for treatment.

Get information regarding our conference.

 

. Exploding mast cells

Posted in allergy, carers, Conference, Physicians, Support Tagged with: , , , ,

Allergy researchers target nighttime ‘clock gene’ activation

Kyodo | October 28, 2013

KOFU, YAMANASHI PREF. – Researchers from Yamanashi University’s faculty of medicine have found that severe allergic symptoms at night and in the morning may be caused by high activation of genes in the mast cells during those hours.

The research group led by Atsuhito Nakao, a professor in the department of immunology at Yamanashi University, said if the activation of genes can be controlled by medicine, it would help control when patients come down with asthma and hay fever symptoms.

According to their study, the genes, called “clock genes,” drive the daily rhythm by inducing vibration inside the mast cells.

The research group said mast cells, triggered by increased activation of genes during the night, raise the level of allergic reactions to allergens such as pollen or tick dust and reduce the level during the day.

Development of symptoms such as nasal congestion or sneezing results from a reaction of histamine, a chemical released from mast cells while undergoing a reaction to allergens accumulated in the body, the researchers said.

They hope their findings can improve medical treatment for allergy sufferers.

Traditionally, medicine only tried to alleviate the effects of histamine, which affects the mucosa and respiratory organs.

“If we are able to control the activation of clock genes, we can also reduce the amount of histamine,” stressed Nakao.

Meanwhile, Tomomi Akagi, secretary-general of Atopikko Chikyu-no-ko Network — a Tokyo-based nonprofit organization for patients suffering from atopic dermatitis — suggested the method may be helpful in asthma treatment.

“There are many children whose asthma symptoms worsen in the middle of the night, but there are only few hospitals where they can be treated at night,” she said. “If we manage (to regulate the gene activation) to evoke symptoms during the day, we will be also able to alleviate the anxiety (children in need of help feel).”

The paper was published online in the Journal of Allergy and Clinical Immunology.

Read the latest survey results from TMS in USA.

TAMS acknowledges and thanks those at TMS for the many hours of work put into producing this survey.

Posted in mastocytosis, research

Masto Moggies

Help TAMS raise money for mastocytosis research and support. Available to purchase at the 2014 TAMS Conference will be our irresistible Masto Moggies.

Also available through info@mastocytosis.com.au. Generously crocheted by Robyn.

$18.50 for TAMS members | $20 for non-members

 

 

Posted in Conference, Fundraising, Support

New speaker announced

A/Prof Glenn Reeves, Immunopathologist & Director, Autoimmune Resource & Research Centre at the John Hunter Hospital in Newcastle will be speaking at this year’s TAMS conference on the latest research and techniques relating to Perioperative Management of Mastocytosis Patients. This is so important and vital information for all of us.

Register today – the TAMS Conference starts in just nine days!

Posted in Conference, Support

Carers support group

After many requests, we are happy to announce we have launched the…

Mastocytosis Australasia Carers (MAC) Facebook Support Group

This carers-only support group is the place for you, the carer, to share, listen and vent your thoughts and experiences. As the most valuable supporter of your family member or friend who suffers from Mastocytosis/MCAD, this is a great opportunity to chat and say what you think and how it effects you, without being judged or feeling guilty.

Posted in carers, facebook, mastocytosis, MCAD, Support, Uncategorized