On October 20, landmarks and venues across Australia are lighting up to raise awareness of Mastocytosis and Mast Cell Diseases – a broad family of diseases that can be life threatening and very often severely debilitating.
October 20 is 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 over 50 landmarks to light up purple (the international colour for Mastocytosis and Mast Cell Activation Syndrome) and are encouraging people to safely take photos of themselves at/near these places and post on social media with the hashtag #SpotOurSpots to help raise awareness.
“Mast Cell Diseases often leave sufferers having to cope with life changing symptoms. Symptoms that range from serious and even fatal (i.e. anaphylaxis) to extreme discomfort through constant pain. The Australasian Mastocytosis Society (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,” said David W. Mayne, TAMS Chair.
If you have not 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.
The Australasian Mastocytosis Society (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. We also network with similar advocacy groups across the world.
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 so you can #SpotOurSpots, to find out more about Mast Cell Diseases or to make a donation to TAMS.
Media Contact: David Mayne, Chair, is available for interview in the lead up to Awareness Day for pre-recorded interviews, and on the day. Please contact him on 0434 860 680.
Other information: Kristin Sinclair, Vice Chair – 0412 313 359, firstname.lastname@example.org