Fibrous Dysplasia/McCune Albright Syndrome Australia

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Fibrous Dysplasia/McCune Albright Syndrome Australia

Fibrous Dysplasia/MCune Albright Syndrome Australia

06/12/2025

Stories like Summer’s yesterday remind us how quickly FD/MAS symptoms can appear without warning.

Living with FD/MAS means carrying fatigue, pain, stress and unpredictability in ways other people may never see.

Today, give yourself permission to pause.
To listen to your body.
To take the weight off your bones, your mind, and your heart.

Whether your week was heavy, hopeful or somewhere in between

You deserve rest
Your body deserves gentleness
You are not alone

Wishing you a peaceful, restorative Sunday. 💙

05/12/2025

This week, we’re shining a light on Summer, who was diagnosed with Fibrous Dysplasia/McCune Albright Syndrome in 2014 after years of unexplained symptoms and countless medical appointments.

Summer shares that she was playing social volleyball something she loved when, mid-game, her foot suddenly gave way beneath her and she collapsed. Moments like this can be shocking, frightening, and deeply discouraging, especially when you don’t yet have answers.

Her story is a reminder of the unpredictable nature of FD/MAS, and of the strength it takes to keep pushing for clarity, care, and understanding.

To read Summer’s full story, visit:
https://fdmasaustralia.com.au/summer

Summer 🌺- thank you for sharing your experience. Your courage helps build awareness, connection and hope for others navigating this rare and complex condition.

You are not alone. 💙

04/12/2025

FD/MAS is considered an ultra-rare condition, with only a small number of people diagnosed worldwide.
Because it’s rare, many people spend years searching for answers or seeing multiple specialists before receiving a diagnosis.

Awareness helps improve:

✔ earlier recognition
✔ better treatment pathways
✔ research
✔ care quality
✔ community understanding

Every share helps someone new learn about FD/MAS.

03/12/2025

Thriving with FD/MAS isn’t about pushing through or pretending you’re fine.
It’s about finding what supports you, adapts with you, and helps you live with more ease.

Today, consider:
✔ What gives me energy?
✔ What drains me?
✔ What can I choose that supports my wellbeing?

Thriving is personal and it looks different for every body.

02/12/2025

FD/MAS demands energy physically, mentally, emotionally. That’s why small moments of care matter so much.
Try one micro-wellness action today:
🌿 A warm shower
🌿 A 2-minute stretch
🌿 A hydration reminder
🌿 A quiet moment
🌿 Saying “no” without guilt
You don’t have to overhaul your life to support your wellness. One gentle choice is enough.

01/12/2025

FD/MAS is a rare, complex condition and most people need support from multiple specialists over time.

Your FD/MAS care team may include:
📍 Endocrinologist
📍 Orthopaedic surgeon
📍 Craniofacial surgeon / Maxillofacial specialist
📍 Dentist or oral surgeon
📍 Pain specialist
📍 Physiotherapist
📍 Occupational therapist
📍 Audiologist
📍 Ophthalmologist
📍 Geneticist
📍 Psychologist or mental health clinician
📍 Radiologist (scans + monitoring)

And in some cases:
📌 Neurosurgeon
📌 Dermatologist
📌 Rheumatologist
📌 Reproductive or endocrine gynaecologist

FD/MAS care is not linear needs change across childhood, adolescence and adulthood.
Knowing your team helps you feel informed, supported and empowered.

Do you have a specialist in Australia that you think is amazing and would like to share there details for a reference database?

30/11/2025

Self-care isn’t about perfection, it’s about paying attention.
Living with FD/MAS means your body works harder than most people will ever understand.
So today, choose one small act of kindness for yourself.

💛 Drink water
💛 Stretch gently
💛 Rest without guilt
💛 Step outside for one minute of fresh air
💛 Ask for help if you need it

Your body deserves care.
Your mind deserves ease.
You deserve softness today.

29/11/2025

FD/MAS demands pacing, physically, emotionally, mentally. Today is about rest, stillness, softness and recovery.

Slow down. Breathe. Your body does so much for you behind the scenes.
Let today be a gentler day.

28/11/2025

Every Saturday, we will celebrate someone from the FD/MAS community lived experience, carers, researchers, clinicians, families and supporters.
Your stories shape awareness and create hope.

If you’d like to be featured, message us or comment below.
Your voice matters. Your story matters.

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27/11/2025

Fibrous Dysplasia/McCune-Albright Syndrome (FD/MAS) is a rare genetic disorder caused by a mutation in the GNAS gene.
This mutation leads to abnormal bone growth, hormone imbalances, and, in some cases, skin pigmentation changes.

FD/MAS is highly variable symptoms can range from isolated bone lesions to multi-system involvement affecting the endocrine system and overall physical function.

Understanding the complexity of FD/MAS is key to improving diagnosis, care, and long-term outcomes for those living with the condition.

26/11/2025

Advocacy isn’t being “difficult.” It’s protecting yours or your loved oneshealth. Try saying:
“I need time to process this information.”
“Can you explain that in simpler terms?”
“I’d like this added to my care plan.”

Your voice matters in every appointment.

25/11/2025

Wellness with FD/MAS looks different for everyone.
It’s not green smoothies and gym sessions. It’s pacing, rest, pain management, emotional safety and doing what feels possible today.

This week, check in with yourself gently:
🔸 What does your body need?
🔸 What does your mind need?
🔸 What can you let go of today?

Your version of wellness is valid.

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Sydney, NSW

Website

http://www.fdmasaustralia.com.au/

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