Hello friends! We all know how frustrating and traumatising it can be when the doctors and specialists that you turn to don’t know how to help, blame you or turn you away. Often, they’ve never heard the word “arthrofibrosis” before. Sometimes if you’re given treatment, the wrong approach makes your pain and dysfunction worse.
There is an urgent need to increase awareness of arthrofibrosis and improve access to treatments. The following suggestions have been shared:
- Hold a “day of recognition” for arthrofibrosis to get the word out there.
I have big news – we’re going to have the first-ever international Arthrofibrosis Awareness Day! And we need your help to make the AAD the huge success it needs to be to make “arthrofibrosis” a word that physicians know worldwide. At this stage we plan to hold this day in April 2023, however, this may change depending on the needs of participating organisations – so stay tuned!
- How you can help – during January and February 2023 (note – timing may change) put as many social media videos and posts out there that you can, showcasing your experience of living with arthrofibrosis. These can be funny, sad, or simply say how arthrofibrosis 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 should be posted in the month leading up to the AAD (#ArthrofibrosisAwareness), please hold off posting until 2023 to allow for planning and for maximum impact.
- My job – contact mainstream media outlets with a good story that catches their attention. We’ll search for a person with arthrofibrosis who has a high profile name that the media will recognise, perhaps an ex-sporting professional, to be the “face” of arthrofibrosis. One possibility is an Australian Rules football (AFL) player, which has one of the highest rates of ACL injuries of any sport (suggestions: contact the AFL Medical Officers Association and Australian College of Sports Physicians). See more on this below.
- My job – hold an information night for GPs, physiotherapists, surgeons etc. I’ll present information about what arthrofibrosis is, and how it impacts quality of life, and suggest “does and don’ts” for treatment. This will be held on the AAD and media will be invited. We hope to find people in Perth, Western Australia (or who are willing and able to travel to Perth), to speak about their experience of living with arthrofibrosis. Chronic Care Australia has offered to host the information night at their facility.
- Fundraising – for research and education tools. Our aim is to raise $20 000 to conduct a 10-person pilot study testing a new PET/CT tracer. This could be the first tool to able to accurately diagnose arthrofibrosis and directly image the dynamics of the disease process, including responses to treatment. We also hope this 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 way to select the most appropriate treatments. Positive results will be published in an international journal, and potentially at the first international arthrofibrosis conference.
- My job – There are two strategies: Go Fund Me and attract a long-term sponsor such as a sports injury centre, big pharma, sporting association etc.
Mainstream media story. Here are the main points we wish to communicate:
- Arthrofibrosis is a dysregulated healing disease in which abnormal cells continue creating scar tissue. The scar tissue adheres to surrounding tissues and contracts, causing loss of normal joint function, inflammation and pain.
- Arthrofibrosis is painful and devastating to quality of life, and can seriously impact a person’s ability to work, socialise, preform daily living tasks and participate in recreational activities.
- Arthrofibrosis can become a permanent disability if it’s not treated early and appropriately.
- Even if the range of motion in the joint is functional, pain can cause ongoing disability.
- Amputation of the leg is seen as the only solution by some people with knee arthrofibrosis.
- Arthrofibrosis is not rare, however there are no statistics on the rates of post-operative arthrofibrosis. Estimates range from 2 to 35 %. Around 10 % is a reasonable estimate for joint surgeries with the rate varying with the type of surgery, surgical technique, post-operative care etc.
- Anybody, at any age, can develop it. Any joint can be affected. In knees, ACL reconstructions and total knee replacements cause the highest rates of post-operative arthrofibrosis.
- There are no cures and no therapies that are backed by high quality research.
- The loss of an independent, active identity and social life can have profound impacts on mental health.
- Patients frequently feel abandoned by doctors who don’t know what to do, or they feel blamed or not believed.
- 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 appropriate medications to treat it.
- 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.
We urgently need:
- Governments to make it mandatory for arthrofibrosis statistics to be kept by hospitals, including the type of surgery, any known causes such as infection, the treatment provided, and outcome at 12 months.
- It to be made mandatory for orthopaedic surgeons to inform patients that arthrofibrosis is a known risk of joint surgery, and the signs to watch for.
- It to be made mandatory for orthopaedic surgeons to inform patients when they have arthrofibrosis.
- Teach arthrofibrosis in GP and physiotherapy training.
- Referrals to rheumatologists early in the disease process to properly assess patients and for the prescription of appropriate mediations.
- A discussion around the best medications and surgical and rehabilitation approaches – arthrofibrosis conference/workshop?
Keep an eye on this website for updates. Contact Dr Kayley Usher, firstname.lastname@example.org if you have questions or suggestions. Please understand that I’m not able to respond to every email but I’ll read them all, and I appreciate your involvement. We need a team effort for this to be the huge success it needs to be.