International Arthrofibrosis Association
Our aims are to
Connect “best practice” evidence-based treatments and recent research with physicians, care providers and patients.
Create a movement and a community where we can support and learn from the experiences and insights of each of us.
Advocate for arthrofibrosis research and education.
Provide scientifically referenced and up to date information about arthrofibrosis to promote better outcomes.
“Arthrofibrosis literally means fibrosis of a joint and it can affect any joint."
“And it's essentially a wound healing response that doesn't stop when it should, so when healing is finished it should stop. But that wound healing response keeps going. It becomes pathological.”
“It's actually created by a special type of cell called myofibroblasts and these are normal cells that get transformed into this new kind of phenotype, and these create the internal scar tissue in the joint and they create adhesions and contractions.“
“Inflammation promotes fibrosis and then once it's going for too long, there’s always feedback effects that kick in between inflammation and fibrosis and it becomes self-perpetuating. So it becomes very, very difficult to resolve.”
“The impact of arthrofibrosis depends on which tissues are affected in the joint. Any of the tissues in the joint can be affected. So you can get fibrotic nerves, tendons, muscles, all of that.”
“They can be just sent away and told there's nothing wrong, or they might even be blamed for it, for non-compliance in physiotherapy, which is a common one.”
“I get a lot of people saying I feel gaslighted and traumatised by those kind of responses.”
“We also need society to be aware so that family understand, because quite often family don't understand and there's no obvious outward signs of what's wrong.”
Showcase your experience of living with arthrofibrosis by sharing your stories. These can be funny, sad, or simply say how AF has impacted your life. An example might be a sped-up video of somebody whose leg doesn’t bend much trying to get into a car, or somebody whose leg won’t go straight walking. As they say, a picture is worth a thousand words, and video is even better.
Our aim is to raise $15-20K to conduct a pilot study into the use of a new PET/CT tracer to accurately diagnose arthrofibrosis and directly assess the dynamics of the disease process, since we currently lack the tools to do these things. In addition, we expect the results will allow us to develop the first evidence-based disease grading system based on disease severity and the location of fibrotic tissues, with the aim of providing a means for selecting appropriate treatments.
Our mission is to provide scientifically referenced information about arthrofibrosis to promote better understanding and outcomes.
Become a member, share your story and join the arthrofibrosis movement. We can help each other by sharing information. By shining a light on arthrofibrosis and raising awareness about it in our community we will take a stand against the devastation it causes.
"Act as if what you do makes a difference. It does"
Contact International Arthrofibrosis Association
The materials presented in this site are provided voluntarily as a public service. It is of a general nature, based on the scientific literature. The information and advice provided is made available in good faith but is provided solely on the basis that readers will be responsible for managing their own assessment of the matters discussed herein and that they should verify all relevant representations, statements and information. Please consult your doctor.