Helpful Links

Whether you’ve recently been diagnosed, are supporting a friend or family member, or are just looking for more information — here are some useful links I’ve pulled together while figuring out how to keep sparkling, never stop smiling, and maybe swear a little less while surviving the daily chaos of life with complex health conditions.

🧬 EDS / HSD

• The Ehlers-Danlos Society – International support and research
• Ehlers-Danlos Australia – Australian based support group for EDS patients

💓 Dysautonomia / POTS

• POTS Foundation Australia – National info and advocacy
• Dysautonomia International – Awareness and research

🌩️ Migraine & Headache Disorders

• Headache & Migraine Australia – Education and awareness
• Migraine Australia – National support and education

🥄 EoE / Food Allergies / MCAS / HaT / SOD

• ausEE – Eosinophilic GI Disorders (EoE, EGIDs)
• Allergy & Anaphylaxis Australia – Allergy and anaphylaxis education
• The Mastocytosis Society (US) – Covers MCAS and Hereditary Alpha Tryptasemia (HaT)
• The Australian Mastocytosis Society – Local support and information
• Guts UK – Digestive health charity with patient-friendly info on SOD and more

🌬️ Asthma & Severe Allergies

• ASCIA – Australasian Society of Clinical Immunology and Allergy – Clinical guidelines, action plans, and fact sheets
• Asthma Australia – National support, advocacy, and education
• Allergy & Anaphylaxis Australia – Community support and awareness

🔥 Pain Management

• Pain Australia – Chronic pain advocacy
• Pain Foundation – Resources and education

🦴 Temporomandibular Joint Dysfunction (TMJD)

• The TMJ Association – Education, research, and advocacy for TMJ disorders

🩸 ANCA Vasculitis

• Australia & New Zealand Vasculitis Society – Advocating for excellence in diagnosis and management of vasculitis
• Vasculitis Foundation – Advocating for early diagnosis, better treatments, and improving quality of life for people with vasculitis
• Australian Red Cross – Lifeblood – Donate Blood – People with vasculitis may need donated blood or plasma during treatment. If you’re healthy and eligible, please consider rolling up your sleeve — it’s one of the simplest, most powerful gifts you can give

🧠 Other Health Resources

• Beyond Blue – Provides support programs addressing issues related to depression, suicide, anxiety disorders and other related mental illnesses
• Bowel Cancer Australia – Awareness, support, and screening
• BreastScreen Australia – National screening program
• Cancer Council Australia – Cancer prevention and support
• Dementia Australia – Resources for people living with dementia and their carers
• National Disability Insurance Scheme – Information about the NDIS
• Ovarian Cancer Australia – Support and research
• Ramsay Hunt Syndrome Foundation – Provides information, education, and support for Ramsay Hunt Syndrome patients, families, and providers
• SANE Australia – Support for people with complex mental health issues and trauma, and for their families, friends and communities

Disclaimer:
I’m not a doctor — just someone with a lot of medical letters on my file and a few too many hospital wristbands. Everything shared on this site comes from my personal experience living with complex chronic conditions. It’s not medical advice, and it shouldn’t replace professional guidance. Always speak to your healthcare team before making any treatment decisions (especially if it involves sparkles, spreadsheets, or ice cream therapy).