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Thursday, April 15, 2021

Raising awareness of Mastocytosis and Mast Cell Diseases

On Tuesday 20 October, landmarks and venues around Canberra and across Australia are lighting up purple to raise awareness of Mastocytosis and Mast Cell Diseases – a broad family of diseases that can be life threatening and very often severely debilitating.

This year marks the third annual International Mastocytosis and Mast Cell Diseases Awareness Day.

The #SpotOurSpots campaign and Awareness Day aim to raise awareness of the need for more accurate diagnostics, better treatments, further investments in research as well as build hope for mast cell disease patients all over Australia in dreaming for a brighter, healthier future.

This year, The Australasian Mastocytosis Society (TAMS) has partnered with a wide range of landmarks including the Belconnen Arts Centre, Telstra Tower, Questacon, Kings Avenue Bridge, Bowen Place Overpass, Malcolm Fraser Bridge, the National Carillon, The Royal Australian Mint, The Canberra Times Fountain, and the Light Rail (stops) to light up purple (the international colour for Mastocytosis and Mast Cell Activation Syndrome). TAMS is encouraging people to safely take photos of themselves at or near these places and post on social media with the hashtag #SpotOurSpots to help raise awareness.

TAMS Chair, David Mayne, said “mast cell diseases often leave sufferers having to cope with life-changing symptoms; symptoms that range from serious and even fatal (e.g. anaphylaxis) to extreme discomfort through constant pain.

“TAMS aims to support and encourage those with mast cell disease and we are thrilled to announce our first national survey as a precursor to vital research pathways. These are positive steps for all that suffer from these debilitating diseases.

“On October 20 we will be lighting up Australia with a purple glow to acknowledge International Mast Cell Disease Day. Prominent and well-known buildings and sites will be lit in purple light as a reminder of all those who suffer,” he said.

What is Mastocytosis?

If you haven’t heard of Mastocytosis or Mast Cell Activation Syndrome (MCAS), you are not alone. Mast cell diseases describes a group of disorders that are caused by the presence of too many overactive mast cells in the body. A mast cell is a type of blood cell made in the bone marrow that is vital in allergic reactions and fighting parasitic infections. Mast cells produce histamine as well as many other chemical mediators that have specific functions. Histamine is a chemical that can cause itching, sneezing, congestion, swelling, flushing and wheezing.

Mast cell diseases can cause tremendous suffering and disability due to symptomatology from daily mast cell mediator release, and/or symptoms arising from infiltration and accumulation of mast cells in major organ systems. Even syncope (fainting) through anaphylaxis can occur. Although Mastocytosis is a rare disease, those suffering with MCAS have recently been increasingly recognised and diagnosed.

TAMS has been created as an advocacy, education and support body for those throughout Australasia who suffer from or care for those with the rare Mastocytosis or MCAS. TAMS has been established due to the overwhelming need for sufferers and their supporters to find a local voice and active support network, and also networks with similar advocacy groups across the

TAMS is an independent not-for-profit incorporated organisation with a committed and functional volunteer committee of individuals – all of whom are sufferers or carers. TAMS is committed to patient support, education, research and advocacy within Australasia.

Visit www.mastocytosis.org.au to see the full list of landmarks and venues, for more information or to donate.

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