Hello friends!
We all know how frustrating and traumatising it can be when the doctors and specialists you turn to for help disbelieve, blame or turn you away. Often this is because they have never heard the word “arthrofibrosis” before. Even if these things don’t happen and you’re given treatment, often the wrong approach makes your pain and dysfunction worse. Professional medical communicators, and yourselves, have shared the following suggestions to increase awareness of arthrofibrosis:
Use hashtag #ArthrofibrosisAwareness
The story we present needs to be short and interesting, but still get to the heart of the problem. Here are the main points we may wish to communicate:
Arthrofibrosis is a dysregulated healing response that keeps going, filling the joint with scar tissue. The scar tissue adheres to surrounding tissues and contracts, causing loss of range of motion of the joint and pain.
Arthrofibrosis is painful and devastating to quality of life, and can seriously impact the ability to work, socialise, preform daily living tasks and participate in recreational activities.
No statics are kept for all post-operative arthrofibrosis. We know it's not rare, however, the actual rates are not known. Estimates range from 2 to 35 % for post-operative arthrofibrosis, and it likely varies depending on type of surgery, surgical technique, post-operative care etc.
Anybody, at any age, can develop it. Any joint can be affected.
There are no cures and no proven therapies.
The loss of an independent, active identity and social life can have profound impacts on mental health.
Patients frequently feel abandoned and are often blamed or disbelieved by the doctors and specialists they seek help from.
Aggressive physiotherapy is frequently prescribed, but often makes the disease worse.
It’s almost impossible to have arthrofibrosis formally acknowledged as disability for insurance or to obtain medications.
A lack of awareness of the word “arthrofibrosis” means that there is no pressure to improve treatment, and research funding is extremely difficult to obtain.
How you can help
During March and April 2023 (note - timing may change) put as many social media videos and posts out there that you can, showcasing the experience of living with arthrofibrosis. These can be funny, sad, or simply say how AF has impacted your life. An example might be a speeded-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. Every little bit will help, but please don’t hurt yourselves! These will be posted in the month leading up to the AAD.
IAA's job
Contact mainstream media outlets with a good story that catches their attention.
IAA's job
Hold an Expert Primer in which the world's top arthrofibrosis experts will present information about what AF is, and how it impacts quality of life, and suggest “does and don’ts” for treatment. This will be posted on the IAA (or on Twitter)
