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 cortico-steroid 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, with the application of the newest and very powerful
chemotherapy drugs. 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 not all orthopedic doctors being equally
experienced in diagnosing and/or treating it. Valuable time is lost in treating the patient,
sometimes leading to a collapsed or otherwise destroyed joint.
• Very little research is on-going for ON/AVN, as expected 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.
_________________________________________________________________
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 of white-hot lightning. It is quite shocking in its intensity, and
causes you to become instantly immobile. It is very puzzling as well as frightening, because you have no
clue why this is happening to you.
You most likely will call your doctor the next day to make an appointment. If you are among the very few
fortunate, you may get a correct diagnosis with the first round of tests, beginning usually with a simple x-
ray. However, for most of us ON/AVN patients, this most often is not the case. For many of us, ON/AVN
usually does not show up in an x-ray until the joint is in a far later stage of the disease. Other, more
sophisticated tests are called for, which in these days and times are not so always easy to procure.
Diagnosing ON/AVN can be somewhat complicated. First, depending upon whether or not your treating
physician has seen and/or treated it in other patients can make a huge difference in his being able to
correctly suspect and then identify the disease. Then, depending upon his most recent knowledge of the
latest developments in treating ON/AVN, you may find yourself in a holding pattern for quite some time.
ON/AVN is very painful for most patients, and can quickly lead to loss of mobility and/or use of the
affected limb. It is not easy to wait for a treatment or procedure that will be of some real help when one is
suffering a great deal of pain. For far too many, there are traumatic personal losses such as jobs, over-
all family income, and sometimes, unfortunately, close relationships.
As far as treatments for it, there have been some remarkable advances in recent years for the relief of
pain and restoration of use for AVN-affected joints without having to undergo total joint replacements.
However, because so many variables exist among patients, not all treatments work the same for
everyone, nor do they provide hoped-for results. This disease reacts differently from person to person,
with no two cases ever being exactly the same. This is why it is imperative to find an orthopedic doctor or
surgeon who is very experienced and knowledgeable in treating ON/AVN. Time is of the essence, and
the earlier your ON/AVN is properly diagnosed and treated, the better. There is no way to know how
quickly the disease may progress, or even if it will progress at all. There is also no way to know for sure
if it will attack more than one joint or bone. Science has yet to unravel these mysteries for us.
Until our support group got its start in 1995, there was not a single patient support system in the entire
world for this second most destructive of all bone ailments (with bone cancer being the first). 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, making them feel even more isolated. 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. Our wish is
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 to get our project underway. 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 hope to make genuine 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.
_______________________________________________________________________
| _______________________________________________ The ON/AVN Support Group Int'l Association, Inc. Box 118 - 8500 Henry Ave. Philadelphia, PA 19128 Email: avninfo@avnsupport.org _____________________________________________________ |
Disclaimer:
The web pages and message boards at our site are for informational and entertainment purposes only. Material placed on any page or
message board does not necessarily reflect the views of Osteonecrosis / Avascular Necrosis Support Group International Association, Inc.
(“ON/AVN SGIA, Inc.”). The information on our site is provided with the understanding that we are not engaged in rendering medical or
professional medical services or advice.
We assume no responsibility for any choices that you may make for your own medical care. Information included in a message board should
not replace necessary medical consultations with a qualified health or medical professional to meet your individual health or medical
needs, or those of your loved ones. What we share here on our site is from members’ experiences and personal opinions only and is not to
be used as a substitute or to replace your own doctors’ medical advice. You are urged to consult with and to abide by your own doctor(s)
medical advice. We do not verify the information placed on any message board on our site and, therefore, cannot verify or judge the merits
or lack thereof, of any information, suggestions, ideas, opinions, or advice.
Neither ON/AVN SGIA, Inc. nor any ON/AVN SGIA, Inc. agents or representatives make any representations with respect to the contents
hereof and specifically disclaim any implied or express warranties of merchantability or fitness for any particular usage, application or
purpose.
On our site, we prefer to base our message board discussions on only FDA approved treatments, medications, procedures, medical
guidelines, etc. If a treatment, medicine, procedure or medical modality is not FDA approved then we ask you to please find another
resource where you may discuss same.
Materials copyrighted by ON/AVN SGIA, Inc., may be downloaded for personal use only.
By accessing our site, you agree to hold ON/AVN SGIA, Inc., its assignees, licensees, owners, officers and directors harmless from any
loss, claim or damage arising from your use of any of the information and ideas contained on the site, including following suggestions or
advice posted on the message boards/web pages.
The web pages and message boards at our site are for informational and entertainment purposes only. Material placed on any page or
message board does not necessarily reflect the views of Osteonecrosis / Avascular Necrosis Support Group International Association, Inc.
(“ON/AVN SGIA, Inc.”). The information on our site is provided with the understanding that we are not engaged in rendering medical or
professional medical services or advice.
We assume no responsibility for any choices that you may make for your own medical care. Information included in a message board should
not replace necessary medical consultations with a qualified health or medical professional to meet your individual health or medical
needs, or those of your loved ones. What we share here on our site is from members’ experiences and personal opinions only and is not to
be used as a substitute or to replace your own doctors’ medical advice. You are urged to consult with and to abide by your own doctor(s)
medical advice. We do not verify the information placed on any message board on our site and, therefore, cannot verify or judge the merits
or lack thereof, of any information, suggestions, ideas, opinions, or advice.
Neither ON/AVN SGIA, Inc. nor any ON/AVN SGIA, Inc. agents or representatives make any representations with respect to the contents
hereof and specifically disclaim any implied or express warranties of merchantability or fitness for any particular usage, application or
purpose.
On our site, we prefer to base our message board discussions on only FDA approved treatments, medications, procedures, medical
guidelines, etc. If a treatment, medicine, procedure or medical modality is not FDA approved then we ask you to please find another
resource where you may discuss same.
Materials copyrighted by ON/AVN SGIA, Inc., may be downloaded for personal use only.
By accessing our site, you agree to hold ON/AVN SGIA, Inc., its assignees, licensees, owners, officers and directors harmless from any
loss, claim or damage arising from your use of any of the information and ideas contained on the site, including following suggestions or
advice posted on the message boards/web pages.
Note: To translate this page into another language, please return to our home page and click on the Babel
Fish link, bottom of page.
Fish link, bottom of page.
" What is Osteonecrosis?"
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
| |
 |
"AVN patients.. Helping each other to get better, one step at a time." |
