Osteonecrosis:   Osteo -  “bone”; Necros – “death”  (derived from Latin and Greek)

Osteonecrosis means, literally,  bone death. Also called Avascular necrosis, osteonecrosis is
on the increase, with more than 20,000 new cases being diagnosed in the US every year.
There are 250,000 documented cases of it at present; but the actual figure is probably much
higher according to the National Osteonecrosis Foundation, an affiliated organization.

    • ON/AVN is caused by a blockage or loss of blood flow to a joint or bone, causing the
    joint/bone to die. Usually, but not always, the hips are first affected, then, other joints
    may follow. It can strike any bone or joint in the body. The bone tissue/joints actually
    die, just as heart muscle tissue dies from a heart attack. If the damage is extensive
    enough, there is the potential for the damage to render the diseased joint ineffective
    for life unless  proper, timely treatment is received.

    • Many victims are multifocal-ON/AVN, meaning more than one bone or joint is affected.
    Once in a while, people are affected with just a very small 'necrotic spot', as one person
    wrote and told me; and, as her doctor told her, the possibility does exist for  such a
    small area of AVN to reverse itself. Therefore, our Website/Association is more geared
    for those whose AVN does not 'just go away,' which appears to be far more often the
    case.

    • Although there are other causes, a great many cases today are induced by a very
    powerful and commonly prescribed family of medications, the corticosteroid group. Not
    everyone who takes these medications gets ON/AVN; science and research have yet to
    tell us why.

    • Many new victims today fall into the late teens to early 30’s age group, as they survive
    once-deadly diseases, such as cancer or leukemia; for many,  their AVN is caused in
    part by some of these potent medications.

    • It is second only in pain to bone cancer, the death of the bones/joints is the same.

    • Treatments for it are mostly surgically interventive, with no way to predict or
    guarantee outcomes or results.

    • ON/AVN does not respect age, gender, or ethnic background; it can strike anyone at
    any time.

    • Of the 20,000 joint replacements in the USA every year, at least 20 percent of them are
    due to ON/AVN.

    • ON/AVN is still considered a rare condition with many orthopedic doctors being not so  
    experienced in diagnosing and/or treating it. Valuable time is lost in treating the
    patient, sometimes leading to a destroyed joint

    • Very little research is on-going for ON/AVN, as it would be with any ‘orphan disease’, or
    a disease that has a growing number of patients but has not yet reached the numbers
    of more wide-spread conditions, such as heart disease or cancer.

    • There is no known cure for ON/AVN

    • We desperately need to turn this around.

Imagine trying to arise from a chair one day and being unable to stand up. Or, imagine trying
to climb a staircase one evening and suddenly collapsing in a world of pain, unable to put any
weight at all upon your leg. The pain hits suddenly, like a bolt from the blue; it is frighteningly
strong, it causes you to become instantly immobile, and you don’t understand why. You call
your doctor the next day and make an appointment. If you are very lucky, you may get a
correct diagnosis with the first round of tests, usually the simple x-ray.


However, for most of us ON/AVN patients, it does not work that way. ON/AVN usually does not
show up in an x-ray until the joint is in a very late stage of the disease. If you are fortunate
enough to have a doctor who wants to investigate further, you will then most likely go for a
bone scan, or perhaps the best test of all for it, the MRI. Then, if the technician who reads
your MRI films knows how to spot ON/AVN in the films, you may get a correct diagnosis:
Avascular necrosis, or osteonecrosis as it is more often called today. The problem is this: by
the time pain is felt, the disease is usually well established, and has been going on deep
within your bones, and without your knowledge, for quite some time. For too many ONAVN
patients, it takes many visits to several different doctors until they find someone who is
knowledgeable about ON/AVN and knows about current treatments for it. Time is the number
one enemy; their precious bones or joints keep on dying, and treatment options are precious
few. Finally, a joint collapse can occur, making a joint replacement the only option – providing
the patient is fortunate enough to be considered ‘old enough’ (e.g.,  in many doctors'
opinions, in a patient's 60's) for a replacement. If too much microfracturing has happened
during the collapse, a replacement might not be possible. Now, imagine ON/AVN being
responsible for taking away your ability to work, and to provide for your family. Imagine
having to fight for disability benefits because ON/AVN is unknown to many SSDI
representatives. That is what our membership often deals with every day of their lives.


Until our support group got its start in 1995, there was no other patient support system in the
world for this second most destructive of all bone ailments. Victims felt isolated and lost in a
sea of pain, immobility, confusion, and fear. No one around them had ever heard of ON/AVN
before, so understanding was at an all time low. I determined that the way out of this maze
was through knowledge, and I believe I was right. The more we know about our own cases of
ON/AVN, the better choices we can make for medical care and for life plans. Our original
website was designed to be like a beacon, or pathway, to many qualified medical knowledge
sites. It remains so today; in addition, we evolved into a huge intra-communication system by
AVN patients,  for AVN patients the world over. Over the years, I have seen ON/AVN come out
of obscurity and into the medical spotlight, where it deserves to be. Today, we are a non-
profit organization with a membership that spans the globe. Our website and our
conversation gathering-place web site on Yahoo contain many hundreds of links for patients
to visit and view, and from which to gather knowledge. Most importantly, we have become a
family that helps one another through the pain and the fear. Now, we wish to help each other
regain our lives as we once knew them.


We are presently on the verge of a truly remarkable event. Knowing that research is critical
to solving the mystery and many puzzles of ON/AVN, our organization has been accepted as a
co-sponsor with The Hospital for Special Surgery, Manhattan, NY,  for  a very special research
project  focusing on this disease. We hope to learn why steroids cause AVN, and we hope to
learn how to successfully apply new bone regrowth techniques for ON/AVN patients. We hope
to find a cure.


We need to help raise the initial startup costs of one hundred seventy thousand dollars.
From that point forward, HSS and we can go to other agencies and apply for grants and other
funding.


Our association has already made history by coming together as a non profit organization for
victims of ON/AVN; we dared to venture into this uncharted territory and made real help into a
reality. We are doing it once again, making history, by being the first patient system ever to
initiate a research project specifically for our disease.


While many of us have lost the ability to walk, this is one step we can take.

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The ON/AVN Support Group Int'l Association, Inc.
Box 118  -  8500 Henry Ave.
Philadelphia, PA  19128

Email:   avninfo@avnsupport.org
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Coping with AVN...
  Editorial Page
For several years, our site featured an editorial page  called "From the Director's Chair" where various topics were
written about from the Editor's perspective. Now, we offer "Coping with AVN" as its replacement. Please discard your
old bookmark for the older page and mark this new one.


                      " What is Osteonecrosis ?"
                 A Primer..
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