A Rare, Painful Disease That Deserves More Attention, More Research, and Better Treatment Options
By Deb Andio | Patient Advocate
Imagine being told that part of your bone is dying because it is no longer receiving enough blood.
Now imagine hearing that the damage could become permanent, your joint could collapse, and you might eventually need major surgery or a joint replacement.
For people living with avascular necrosis (AVN), also known as osteonecrosis, this is not an imaginary scenario. It is a frightening and painful reality.
November 29 is Avascular Necrosis–Osteonecrosis Awareness Day, a day dedicated to educating the public, supporting patients and families, and bringing much-needed attention to a disease that far too many people have never heard of.
As a patient advocate, I believe awareness is only the beginning. We need earlier diagnoses, better treatment options, increased research funding, and greater involvement from our elected officials.
Because having a rare disease should never mean being forgotten.
WHAT IS AVASCULAR NECROSIS?
Avascular necrosis occurs when the blood supply to an area of bone is reduced or interrupted.
Bone is living tissue. Just like other parts of our bodies, it requires oxygen and nutrients delivered through the bloodstream to remain healthy.
When that blood supply is disrupted, bone tissue begins to die.
Over time, the affected bone can weaken, fracture, and eventually collapse. When this occurs near a joint, it can cause severe pain, arthritis, disability, and loss of mobility.
Although AVN is most commonly associated with the hips, it can also affect the knees, shoulders, ankles, wrists, feet, and other bones.
Some people experience significant pain early in the disease. Others may have very few symptoms until substantial damage has already occurred.
That is one of the reasons early diagnosis is so important.
THE STATISTICS: RARE DOES NOT MEAN INSIGNIFICANT
Let’s talk about some numbers.
- Approximately 20,000 to 30,000 new cases of osteonecrosis are commonly estimated to occur annually in the United States, although estimates vary and often focus on osteonecrosis of the hip.
- Historically, osteonecrosis has been associated with approximately 5% to 10% of total hip replacements in the United States.
- The condition frequently affects adults between the ages of 20 and 50, although it can occur in children and older adults.
- Both hips can be affected, even when symptoms initially appear on only one side.
- Some patients develop osteonecrosis in multiple joints.
- Without appropriate management, progressive disease can result in joint collapse and the need for surgery.
These figures are estimates drawn from published medical literature, not a complete national count of everyone living with osteonecrosis.
And that brings up another concern.
We need better patient data and more comprehensive research to understand exactly how many people are affected.
Behind every statistic is a real person.
A parent struggling to pick up a child.
A grandparent who can no longer enjoy a walk with the grandchildren.
A worker trying to make it through another shift despite severe pain.
A young adult facing joint replacement decades earlier than expected.
These are the people behind the numbers.
ONE DISEASE FAMILY, MANY DIFFERENT NAMES
One of the most confusing things about avascular necrosis is that it goes by several names.
You may hear physicians use the terms:
- Avascular Necrosis (AVN)
- Osteonecrosis (ON)
- Aseptic Necrosis
- Ischemic Necrosis of Bone
- Bone Infarction
There are also specific conditions associated with osteonecrosis or related disorders of bone development and circulation.
These include:
1. Legg-Calvé-Perthes Disease
Primarily affects children and involves disruption of the blood supply to the femoral head, the ball-shaped portion of the hip joint.
2. Kienböck Disease
Affects the lunate bone in the wrist and can lead to pain, stiffness, weakness, and difficulty using the hand.
3. Freiberg Disease
Affects the metatarsal head in the foot, most commonly near the second toe. It can cause forefoot pain and difficulty walking.
4. Preiser Disease
An uncommon form of osteonecrosis involving the scaphoid bone in the wrist.
5. Köhler Disease
A childhood condition affecting the navicular bone in the foot.
6. Mueller-Weiss Disease
A rare condition involving collapse and deformity of the navicular bone in adults.
7. Chandler Disease
An older medical term used for osteonecrosis of the femoral head in adults.
8. Kümmell Disease
A condition involving delayed collapse of a vertebral body, often associated with osteonecrosis following a spinal compression fracture.
9. Panner Disease
A childhood condition affecting the capitellum, a portion of the elbow joint.
10. Osteonecrosis of the Jaw (ONJ)
A condition involving exposed or damaged jawbone that fails to heal normally. Medication-related osteonecrosis of the jaw (MRONJ) is associated with certain medications and has different risk factors and treatment considerations.
Not all these conditions are medically identical. Some are classified as osteochondroses or other related bone disorders rather than conventional adult AVN.
However, understanding these names helps patients recognize the broader family of conditions involving bone injury, disrupted circulation, and bone deterioration.
It also reminds us that osteonecrosis is not simply a disease of the hip.
WHAT CAUSES AVASCULAR NECROSIS?
There are several recognized risk factors and associated medical conditions.
These include:
- Traumatic injuries, fractures, and dislocations
- Prolonged or high-dose corticosteroid use
- Heavy alcohol consumption
- Sickle cell disease
- Lupus and certain autoimmune conditions
- Blood-clotting disorders
- Certain cancer treatments
- Decompression sickness
- Other conditions affecting circulation
And sometimes?
There is no identifiable cause.
This is called idiopathic osteonecrosis.
Imagine being diagnosed with a disease that is damaging your bones and not even knowing why it happened.
For many patients, that uncertainty is another difficult part of living with AVN.
WHY EARLY DIAGNOSIS MATTERS
AVN can sometimes be mistaken for other orthopedic conditions, particularly in its early stages.
A person experiencing hip pain might initially be evaluated for arthritis, bursitis, or a muscle injury.
The problem is that early AVN may not appear on ordinary X-rays.
MRI is especially useful because it can identify osteonecrosis before significant bone damage becomes visible on X-rays.
Early detection may provide opportunities for treatments designed to preserve the natural joint before collapse occurs.
Unfortunately, some people do not receive their diagnosis until the disease has already progressed.
We need greater awareness among healthcare professionals and patients so that concerning symptoms receive appropriate evaluation.
WHAT TREATMENTS ARE AVAILABLE?
Treatment depends on the location of the disease, its severity, whether the bone has collapsed, and the patient’s individual circumstances.
Current options may include:
- Pain management
- Reduced weight-bearing and mobility aids
- Physical therapy and activity modification
- Core decompression surgery
- Bone grafting procedures
- Selected joint-preserving surgical techniques
- Joint replacement when damage is advanced
Researchers are also studying biological and regenerative approaches, including treatments involving bone marrow-derived cells.
However, many emerging treatments remain experimental, and their long-term effectiveness is still being investigated.
There is currently no single proven treatment that reliably reverses established osteonecrosis in every patient.
That is why research is so important.
We need treatments that do more than manage symptoms.
We need to investigate ways to preserve blood flow, protect healthy bone, prevent collapse, and reduce the need for major surgery.
Imagine how many lives could be changed if more patients had effective options before their joints were permanently damaged.
WE NEED OUR ELECTED OFFICIALS TO UNDERSTAND THIS DISEASE
This is where advocacy becomes especially important.
Awareness campaigns help educate the public, but scientific progress also requires funding, research infrastructure, clinical trials, and access to appropriate medical care.
Our elected officials need opportunities to hear from people living with osteonecrosis.
Patients and families can help explain why rare musculoskeletal diseases deserve consideration in federal and state healthcare discussions.
Important areas for public policy discussion include:
1. Increased Research Opportunities
Encouraging greater attention to osteonecrosis research through the National Institutes of Health and other appropriate research programs.
2. Better Diagnostic Education
Supporting medical education that helps healthcare professionals recognize osteonecrosis earlier.
3. Improved Treatment Development
Encouraging clinical research into bone preservation, improved circulation, regenerative approaches, and surgical innovations.
4. Better Access to Healthcare
Examining barriers to medically necessary imaging, specialist care, rehabilitation, and treatment.
5. Improved Patient Data
Supporting research registries and better data collection to understand how many people live with AVN and which treatments provide the best outcomes.
6. Greater Recognition of Chronic Pain and Disability
Helping policymakers understand how osteonecrosis can affect employment, independence, financial stability, and everyday life.
These are conversations worth having with elected officials at every level of government.
Patients can contact their congressional representatives, senators, and state legislators to share their experiences and ask what opportunities exist to support rare disease research and healthcare access.
You can locate your elected officials at:
WHAT CAN WE DO ON NOVEMBER 29?
You do not need to be a medical professional or an experienced advocate to make a difference.
You can share educational information about osteonecrosis.
You can tell your story if you feel comfortable.
You can support someone who is newly diagnosed.
You can encourage patients to ask questions and seek appropriate medical evaluations.
You can learn about research and clinical trials.
And you can contact your elected officials to explain why this disease deserves greater attention.
Every voice contributes to awareness.
Every shared story helps someone else feel less alone.
And every informed conversation creates another opportunity for understanding.
TO EVERYONE LIVING WITH AVASCULAR NECROSIS
I want you to know that your pain matters.
Your struggles matter.
Your quality of life matters.
You deserve physicians who listen, accurate information, access to appropriate care, and hope for better treatment options.
Living with a disease that many people have never heard of can be incredibly isolating.
There are people who do not understand how painful AVN can be or how dramatically it can change someone’s life.
But your disease does not become less serious simply because it is uncommon.
You are not just a diagnosis or a statistic.
You are a person with a family, responsibilities, dreams, and a life you want to continue living.
As an advocate, I want to see a future where osteonecrosis is diagnosed earlier, where patients have more choices, and where fewer people must face the possibility of joint collapse and replacement.
I want researchers to have opportunities to pursue promising treatments.
I want healthcare professionals to recognize the warning signs.
And I want our elected officials to understand the real-life impact of this painful disease.
November 29 is Avascular Necrosis–Osteonecrosis Awareness Day.
Let’s use this day to educate, share our experiences, support research, and make sure the voices of people living with osteonecrosis are heard.
Because rare does not mean insignificant.
Pain should never be invisible simply because a disease is unfamiliar.
And every patient deserves hope for a better tomorrow.
Awareness begins with education. Progress requires research. And meaningful change begins when people are willing to listen.
Deb Andio
Patient Advocate
EDUCATIONAL RESOURCES
National Institutes of Health — Osteonecrosis
https://www.niams.nih.gov/health-topics/osteonecrosis
American Academy of Orthopaedic Surgeons — Osteonecrosis of the Hip
https://orthoinfo.aaos.org/en/diseases–conditions/osteonecrosis-of-the-hip/
ClinicalTrials.gov — Osteonecrosis Research
https://clinicaltrials.gov/search?cond=Osteonecrosis
Find Your Elected Officials
https://www.usa.gov/elected-officials
Disclaimer: This article is intended for educational and advocacy purposes only and does not replace professional medical advice.
