Fibrous Dysplasia/McCune Albright Syndrome Australia

27/02/2026

Rare Disease Day 2026 raises awareness for the more than 300 million people worldwide living with a rare disease along with their families and carers who support them every day.

Around 72% of rare diseases are genetic, often complex, lifelong, and misunderstood. Behind every statistic is a person, a family, and a story of resilience.

The long-term goal of Rare Disease Day is clear: to achieve equitable access to diagnosis, treatment, healthcare, social support, and meaningful opportunities for all those affected.

Rare does not mean invisible. Rare does not mean alone.



https://www.rarediseaseday.org/

31/12/2025

19/12/2025

Alicia shares her experience of living with monostotic Fibrous Dysplasia, where the condition affects a single bone.
While she describes feeling lucky that her FD is limited to one area, her story also highlights an important reality Fibrous Dysplasia is rare, highly variable, and often underdiagnosed.

Because mild cases may never be identified, the true incidence and prevalence of FD in the general population is still unknown.
This makes awareness, listening, and informed care critical regardless of whether FD affects one bone or many.

Every FD journey is different.
No experience is “more” or “less” valid.
Each story helps build understanding of how this condition presents across a spectrum.

You can read Alicia’s full story here:
https://fdmasaustralia.com.au/alicia

Thank you, Alicia, for sharing your experience and contributing to greater awareness and understanding of Fibrous Dysplasia.

You are not alone. 💙

13/12/2025

Living with FD/MAS often means carrying more than just physical symptoms.
It can mean holding uncertainty, managing pain that fluctuates, and constantly adjusting to what your body can do today - not what it used to do.

Today, let go of the pressure to push through.
Let today be about listening instead of striving.

✨ Rest when you need to
✨ Change plans without guilt
✨ Sit down before exhaustion hits
✨ Choose comfort over productivity

You don’t have to make today meaningful by doing more.
Sometimes the most meaningful thing you can do is rest.

Be gentle with yourself.
Your body is doing its best. 💙

12/12/2025

Haley shares the experience of watching her younger sister live with ongoing pain and exhaustion and repeatedly being told the same things many people with rare and invisible conditions hear: lose weight, change your lifestyle, get more sleep, eat better.

Advice that can feel dismissive when something deeper is going on.

Her story reflects a reality many families face with FD/MAS, long periods of uncertainty, unanswered questions, and symptoms that are real but not always recognised or understood early.

Pain and lethargy are not always lifestyle issues.
Sometimes they are signs of a complex medical condition that needs deeper investigation and specialist care.

Haley’s words remind us why listening matters.
Why persistence matters.
And why no one should feel brushed aside when their body is telling them something isn’t right.

You can read Haley’s full story here:
https://fdmasaustralia.com.au/haley

You are not alone. 💙

11/12/2025

Fibrous Dysplasia (FD) is a rare bone disorder where normal, healthy bone is gradually replaced by fibrous (scar-like) tissue.
This change can make the affected bones:
• weaker
• more prone to fractures
• painful
• misshapen
• and in some cases, asymmetrical

FD can appear in just one bone (monostotic) or multiple bones (polyostotic), and the severity varies from person to person.
Some people experience only mild symptoms, while others may face significant pain, mobility issues or structural changes over time.

Understanding how FD affects bone helps clinicians plan better monitoring, treatment and long-term support.

10/12/2025

Living with FD/MAS means navigating challenges most people will never see unpredictable pain, fatigue, medical appointments, scans, surgeries, hormonal changes, and symptoms that shift without warning.

And yet, every day, you keep going.
You adapt.
You show up for yourself in ways that take quiet, extraordinary courage.

Strength isn’t always loud.
Sometimes it looks like pacing, asking for help, resting when your body demands it, advocating for your needs, or simply making it through the day.

Today, we celebrate you - your resilience, your courage, and the strength you show in all the small, unseen moments.

You are doing better than you think. 💙

09/12/2025

Living with FD/MAS means your energy, pain levels and emotions can shift from day to day sometimes even hour to hour.
Wellness isn’t about controlling those changes; it’s about responding to them with care.

Today, try checking in with yourself gently:

💭 What feels heavy in my body today?
💭 What feels okay?
💭 What would make today a little easier?
💭 Where can I slow down or soften?

Wellness doesn’t have to be big or complicated.
It can be:
🌿 A moment of quiet
🌿 A warm drink
🌿 Stretching what’s tight
🌿 Sitting down before you “crash”
🌿 Letting go of one expectation

Your body works hard.
Your wellness deserves attention without pressure.

08/12/2025

FD/MAS doesn’t just affect bones it can also impact several hormone systems.
That’s why an endocrinologist is often one of the most important specialists in your care team.

An endocrinologist helps monitor and manage:
🔵 Early or rapidly progressing puberty
🔵 Thyroid overactivity (hyperthyroidism)
🔵 Growth hormone excess
🔵 Vitamin D, calcium and bone metabolism
🔵 Adrenal gland changes
🔵 Menstrual or fertility concerns
🔵 Hormonal fluctuations across adulthood

Because hormonal changes can appear at any stage of life, endocrine care is ongoing, not one-time.
Your endocrinologist may adjust tests, medications, or monitoring plans as your needs evolve and that’s a normal part of FD/MAS management.

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.