More About Campaign
We are a group of people who suffer from osteonecrosis. Experiencing the disease ourselves, we know the pain and difficulties we face everyday. So we are trying to raise awareness to help others to know the risk factors for acquiring this painful disease and to support those who already do.
Osteonecrosis is a bone disease that affects children, women, and men all over the world. It has several different names like Osteonecrosis or ON, Avascular Necrosis or AVN, Aseptic Necrosis, Ischemic Necrosis, - however, they are all the same disease. Simply, osteonecrosis is death in the bones from insufficient blood supply. Bone fractures, and other injuries can damage the blood vessels and impair circulation to the bones. Medications, specifically Corticosteroid medicines make one more prone to having the disease, although why has not been determined. Other medical conditions, such as sickle cell disease, myeloproliferative disorders, and especially those with compromised healing due to an autoimmune disease, like Lupus.
The disease isn't well known to the public, many have never heard of the disease. People stricken with osteonecrosis feel misunderstood and alone, children have difficulty talking to their friends and parents feel unsupported and frustrated by the differing opinions of physicians. This is the principle reason we are trying to raise awareness and get public support. Then we can work to raise funding for a cure, or new treatments, and even new research into the factors that predispose a person to the condition.
should have to face this painful disease alone !
Many of us belonged to Facebook support groups for Osteonecrosis, which are really a great place to connect with others who can relate to what you are going through, and can tell you about the things they have experienced. We learned that most of our struggles were common: getting to the correct diagnosis, the isolation of no one knowing this disease, dealing with chronic pain. It affects your family and the way it changes your whole life:. Children cry because they want to be like their friends, people who lose careers they are passionate about, being isolated from family activities because you cannot walk. One of the saddest aspects is the lack of support from those who have never heard of the disease.
After hearing so many amazing stories of stories, we started questioning "why isn't anything being done ?" After struggling to find the place we fit into, we decided to make our own. We created our awareness group. We started small, as others joined in, our goals and energy grew. We write letters, make videos, we tweet, we do outreach and share ourselves and our stories to inspire others. We do everything we can do to support those with the disease, fight for those who cannot fight for themselves, and strive for more research into preventing others from knowing this pain. We went from "something has to be done" to "why don't we do something", it's very good feeling to be fighting back. Now that you've found us, we hope you join us. We love new friends and we need everyone to get this job done.
We need to get awareness of this disease out there, if even just to the doctors who misdiagnose us!
Very important, to raise awareness, not enough people even know, about this.