Rare Disease Awareness Day -2026 Osteonecrosis

Living With Osteonecrosis: My Story & Why I Advocate

Today is Rare Disease Awareness Day, and for me, this is deeply personal.

I live with osteonecrosis in my knee — a condition that changed the entire course of my life.

But my journey with chronic pain didn’t start there.

I was first diagnosed with osteoarthritis in 1995.

Then spondylosis in 2010.

And in 2014, after a medial meniscus tear, I was diagnosed with osteonecrosis in my knee — the condition that ultimately led to my medical disability.

I am definitely no stranger to pain.

My journey began in 2014 with what seemed like a routine knee injury. Something painful, yes… but manageable. Something that would heal with time.

But it didn’t.

Instead, that injury disrupted the blood supply to the bone in my knee. Over time, the bone began to deteriorate — leading to osteonecrosis, a disease where bone tissue dies due to lack of blood flow. What started as a tear became a life-altering diagnosis.

A Lifetime of Living With Pain

For decades, I have lived with chronic musculoskeletal conditions that affect how I move, how I function, and how I experience daily life. Pain isn’t something that visits occasionally — it’s something that has walked beside me for years.

Osteoarthritis brought joint degeneration. First, I had it in both knees, then part of my spine, then both hands both feet.

Spondylosis affected my spine and mobility. I then was diagnosed with spondylolisis due to bilateral pars fracture and after a couple years spondylolethesis as my spine slipped.

And osteonecrosis added another devastating layer, impacting my knee and ultimately my independence.

These diagnoses didn’t just affect my body — they reshaped my entire life.

The Impact on My Life

Living with multiple chronic conditions means constant adjustments:

Pacing my energy Planning around pain levels Managing mobility limitations And coping with the emotional toll of invisible illness

You can look “fine” on the outside while fighting a battle inside your bones every single day.

Why I Continue to Advocate

Because I know what it means to be dismissed.

To be misunderstood.

To have pain that people cannot see or measure.

I raise awareness so that others living with osteonecrosis, osteoarthritis, spondylosis, and other chronic conditions feel seen, heard, and believed.

And I will keep advocating — not just for myself, but for every person who wakes up each day in pain and still keeps going.

I am definitely no stranger to pain…

But I am also no stranger to resilience. 💜