A little about TAMS
The Australasian Mastocytosis Society (TAMS) is an association that is designed to provide education, awareness, advocacy, support and research for those living with a rare mast cell disorder (MCAS) called Mastocytosis. We are not for profit, operating by the efforts of volunteers who either suffer or care for someone with the condition. Our region extends across Australia and NZ with the goal of extending into Asia. We are connected with our international equivalents across the USA, Canada and the U.K.
Every year we host an education and support conference connecting patients and carers to a high standard of specialist doctors from immunology, dermatology, allergy, haematology, dietician and psychology. Education is vital but it’s the support felt by conference attendees from fellow sufferers and carers that is felt the deepest. Knowing they’re not alone in the journey. What a difference that makes to someone living with a rare condition!
But there’s a challenge we face…
On the weekend of 6-8th October this year we will be hosting our 6th annual Mastocytosis conference in Sydney, Australia. To bring to our conference attendees a high standard of specialist speaker, we have invited a highly trained and experienced Dermatologist from the UK; Dr Clive Grattan. His experience with Mast cells and Mastocytosis is extensive and will be incredibly valuable.
The challenge is…. to afford to fly him here to Australia, accommodate him and fly him safely home again. Being a small not-for-profit association our budget is tight. We need your help.
Here’s what we’re doing about it
February 28th is Rare Disease Day. From this, we are launching our Virtual Walkathon fundraising campaign. Many sufferers are unable to exercise due to health issues or possible exercise-induced anaphylaxis so…. instead of actually ‘walking’ we’re encouraging all participants to STEP out of their often isolated world, share some knowledge of Mastocytosis with others and ask for donations to help TAMS fund the 2017 Mastocytosis conference and speakers. Every $$ raised is another step forward in our journey to create awareness and to build stronger connections with the doctors who can help us live better lives with our irrational, unpredictable Mast cells.
You can join us
By signing up to ‘walk’ every dollar you raise will bring us a step closer to realising our goal- to bring Dr Grattan from the UK here to Sydney and to connect his knowledge to the doctors here in Australia who treat us.
And here’s something else amazing you will help to bring about through your support and donations …
TAMS is hosting a Rare Diseases Symposium for the range of specialist doctors caring for patients with Mast cell Activation syndrome and Mastocytosis the day before the Mastocytosis patient and carer conference. This will be an incredible opportunity for our frontline treating doctors to learn from some of the best and to share their own trials, challenges and successes with treatment for patients. Dr Grattan will be an incredible key note speaker with his wealth and breadth of knowledge and experience. Better understanding leads to better treatment and then better health outcomes for patients. How great to be a part of making this a reality!
Thank you for supporting The Australasian Mastocytosis Society’s Virtual Walkathon for 2017: 28 February (Rare Disease Day) – end April.
What is Mastocytosis or MCAS?
Mast cell disorders include Mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS) where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headaches, bone pain and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odours, medications, insect stings and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers and leukotriene inhibitors, while anaphylaxis is a medical emergency that requires epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver and spleen. Most patients with Mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur which may require chemotherapy. Diagnosis of Mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfil all criteria for Mastocytosis but exhibit many of the symptoms, may or may not have measurable increases in mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with Mastocytosis do.