AVN UK Support

Welcome to Avascular Necrosis AVN UK Support. We are a charitable trust dedicated to spreading awareness understanding support and research into the rare condition of Avascular Necrosis AVN.

Avascular Necrosis

Avascular Necrosis (AVN) disease is also known as Osteonecrosis (ON), Ischaemic bone necrosis, Bone Infarct, and Aseptic Necrosis.

In children, it is known as Perthes disease. When triggered by radiotherapy it can be known as Osteoradionecrosis (ORN). We generally refer to it as AVN. When occurring in the knee, it may be known as SPONK or SONK and when in the jaw it may be known as BRONJ.

There are no statistics available but we believe there are between 750 and 2,000 new cases of AVN diagnosed each year in the British Isles.

We are the only UK support group dedicated to AVN.

Healthy bones

Definition of Avascular Necrosis AVN

Avascular – Having few or no blood vessels*

Necrosis – Death of living tissue*
* From Encyclopaedia Britannica

The bones in the joint having been deprived of a good blood supply, resulting in the death of the bone. In time this concludes with the partial or complete collapse of the affected joint.

It is a disabling condition affecting any joint in the body with no known cure. It can affect a single joint, many different joints (multifocal), or both left and right of the same joint (bilateral).

The disease affects young and old alike with resulting continuous chronic pain that some say is comparable with bone cancer.

Avascular Necrosis AVN is not classed as hereditary, but some of the causes may be.

While disabling, thankfully AVN is not life-threatening. Unfortunately, it is often progressive, meaning it worsens with time, so managing AVN can be a lifelong process.

MRI scan displaying an unusual case of avascular necrosis AVN in the long bones

Understanding the pain from AVN
Feedback from almost all AVN sufferers in our community has revealed that our health service specialists have little or no understanding of the horrific pain that accompanies AVN. The X-RAY and MRI scans to help the specialist understand what has happened within the affected joint / bone, but these images do not convey the chronic pain and devastating effect this has on the quality of life. Therefore this is one of the biggest frustrations for all AVN sufferers.

Awareness of AVN in the British Isles
Very few people have heard of Avascular Necrosis AVN or Osteonecrosis. Except for the medical profession, only sufferers and those close to them probably have any awareness of the disease.

Sadly when first getting diagnosed it can be a very lonely place, full of frustration, despair and complete loss of hope.

Our UK charitable trust addresses these frustrations by opening doors of knowledge and shared experiences to sufferers and those around them.  By definition, sharing is helping.

We are helping
Charitable trust dedicated to spreading awareness, understanding, support, and research into the rare bone condition of Avascular Necrosis AVN or Osteonecrosis ON in the UK.

First of all, we created this informative website, the content provided is for information purposes only and is not in any way intended to be a substitute for medical consultation with a qualified professional (see disclaimer). This website is designed to be uncomplicated and easy to follow, for you to benefit without getting lost. It is split into different sections, explaining AVN osteonecrosis and how it can affect different joints in our bodies, how to live with it day-by-day and to give our charity news.

Please take some time a look around, if you like what you see please consider joining our community, there are no costs or fees.

Members’ feedback
“I’m finding it shocking and surprising the number of new people joining the community. Let me explain. I was diagnosed with AVN first in both knees back in 2005, over the next few years it was found in both hips and shoulders. I had never come across AVN before and felt like I was the only person with it, I was always having to explain to people what it was.”
“Thankfully I found this website and community over a year ago and realised I was not the only one suffering from AVN, it has been such a help talking to fellow sufferers who understand what I am going through.”
Text taken from a recent post in our community forum.

Social Media
We have recently created our facebook and twitter social media pages, please take a look and “follow” or “like”.