Patient profiles: Spotlighting Mast Cell Diseases year-round

The Australasian Mastocytosis Society (TAMS) invites you to participate in our upcoming series of patient profiles.

By completing a patient profile in the below survey, you have an opportunity to share valuable insights into living with a mast cell disease.

Sharing your lived experience will raise awareness about the challenges faced by those living with these conditions daily. Your participation will provide firsthand accounts on why awareness of these conditions should be important to the broader community in Australia and Aotearoa New Zealand.

Your contribution will also offer invaluable support and solidarity to others, regardless of if they are starting their journey with a mast cell disease, feeling isolated and overwhelmed, or simply seeking connection and understanding from others within our mast cell community.

If you have Mastocytosis, Mast Cell Activation Syndrome, or symptomatic Hereditary Alpha Tryptasemia, we encourage you to contribute to this series dedicated to increasing visibility and understanding of mast cell diseases within and outside our community year-round.

Excerpts from your patient profile may be shared on TAMS' website and social media to raise awareness and understanding of our rare disease group all year round!

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* 1. Name

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* 2. Email

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* 3. What is your diagnosis

Indolent Systemic Mastocytosis

Cutaneous Mastocytosis

Systemic Mastocytosis

Advanced Systemic Mastocytosis

Mast Cell Activation Syndrome (primary/monoclonal)

Mast Cell Activation Syndrome (secondary)

Idiopathic Mast Cell Activation Syndrome

Hereditary Alpha Tryptasemia

Undiagnosed / Seeking diagnosis

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* 4. How long have you been sick with symptoms that were established to be your mast cell disease?

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* 5. How long after those symptoms developed did you receive a diagnosis?

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* 6. Can you describe what it's like living with a mast cell disease day-to-day?

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* 7. What misconceptions or misunderstandings about mast cell diseases have you encountered, and how do you address them?

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* 8. Can you share a tip to help people provide better support and understanding for their loved ones with a mast cell disease?

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* 9. What makes you hopeful for a healthier future?

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* 10. How have your life plans had to change because of your mast cell disease?

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* 11. What's the biggest change in your life since developing your mast cell disease? How has it affected you and how do you work around it?

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* 12. When experiencing a flare, what hobby, interest or activity do you do to help distract from symptoms and improve your mood?

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* 13. How do you explain your condition to others who may not be familiar with mast cell diseases?

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* 14. What is one thing you would like the public to know about mast cell diseases that they might not be aware of?

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* 15. How would you describe TAMS' role in supporting your journey?

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* 16. If you are a current or past member of TAMS, how has being a TAMS member and part of its community supported your journey?

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* 17. If you are willing to share a photo of yourself or something that represents you (pet photo, artwork, online avatar) for TAMS to use at its discretion, alongside any selected quotes from your above, please upload your chosen image here.

PDF, DOC, DOCX, PNG, JPG, JPEG, GIF file types only.

Choose File

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* 18. Permission (select which is relevant):

I am 18 or over and have completed this survey about my own story. I permit TAMS to publish my story on the TAMS website, e-newsletter and social media accounts.

I have completed this on behalf of someone under the age of 18 (as their parent or carer), and I give permission for TAMS to publish their story on the TAMS website, e-newsletter, and social media accounts.