Real Stories...Real People, a positive chain of events for Ankylosing Spondylitis

Real Stories...Real People, a positive chain of events for Ankylosing Spondylitis

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In November 2010, I pitched the concept of a seminar directed at physiotherapists. The focus would be on Ankylosing Spondylitis & other inflammatory rheumatic disease such as Rheumatoid Arthritis. I pitched the concept for this seminar to the team at Abbott, a pharmaceutical company, as we needed a sponsor and organisational resources, given it would be hard for BJC Health and me alone to pull this idea off.

Thankfully, the team there were already thinking along similar lines & were very receptive to the idea. I must congratulate and thank the managerial team at Abbott for going out on a limb to support education & for helping patient advocacy.

AS You See It Seminars for Physiotherapists came into existence.

Why did we bother?

The training physiotherapists receive at both university and post-graduate levels on rheumatic disease is negligible. This is a shame as these diseases are common. I’m sure physios (also known as physical therapists in the US) see these patients. Think of the patient with a persistent knee effusion or recurrent back pain or a recalcitrant achilles tendon issue or bilateral tennis elbow.

And if physiotherapists believed that they didn’t see these patients, my worry was that they were missing the diagnosis.

If you don’t have an understanding or knowledge of the symptoms or the signs, there’s a good chance you won’t be looking for it.

Rheumatologists are the primary physicians for these diseases, and sadly, my craft group has been poor so far in terms of educating physiotherapists.

This unfortunately meant that patients suffering from these common diseases sometimes receive ineffective and inappropriate treatment. Patients suffer. Pain, difficulty with simple daily activities, depression and in some cases, progressive damage and deformity result. This is a situation that must change especially as very effective treatment is now available.

The 1st seminar was held in Sydney on Sunday February 20th. Our BJC Health team presented along with other committed doctors & physiotherapists. There were more than 200 attendees. Gratifying.

This was the start of a chain of events.

Another seminar was organised, in Melbourne & Adelaide simultaneously on April 10th. Another 200+ attendees in Melbourne & 100+ in Adelaide.

Momentum. A need had been identified and clear interest was being shown.

The Australian Physiotherapy Association is now on board. They've even now set up a specific website to help promote World Ankylosing Spondylitis Day, May 7th.

Our 3rd seminar falls on this auspicious day. It will be held in Brisbane, with a concurrent seminar & some live feed to Hobart. At the same time, there will be a webcast of the event around Australia & internationally.

This is very exciting. A simple idea has grown and taken a life of its own.

Now, 3 patient advocates from North America, who use social networking to improve awareness of Ankylosing Spondylitis have come together to help this project.

Kelly Johnston started a facebook support group over 2 years ago called “ASAP: Ankylosing Spondylitis Awareness Project”. She also writes a very thoughtful blog, Hurting But Hopeful. Rick Pokerwinski is an administrator on the ASAP facebook page and the twitter account manager for the Hope and Apples project. Jennifer Visscher, who I've profiled previously as I've been captivated by her “Apples for AS” project, produces a unique apple art piece every day & aims to do this for a whole year.

Together, we are making a difference.

A change in physiotherapist's knowledge base, a change in attitudes to inflammatory rheumatic diseases, should & must lead to change in outcomes for patients as they get recognised and diagnosed earlier.

BJC Health wants to continue to advocate for our patients. But to be effective, we need to continue to form partnerships with others who care. Doctors & allied health professionals need to take a stand. Pharmaceutical companies can play a role. The support of Health Associations is crucial. Patient advocates can inspire.

I hope more of you will help grow this positive chain of events.

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Dr Irwin Lim is a rheumatologist and a director of BJC Health.

BJC Health provides a connected care multidisciplinary team philosophy to deliver positive lifestyle outcomes through a holistic approach to those with degenerative & inflammatory arthritis, tendon injury and lifestyle diseases. Our clinics are located in Parramatta, Chatswood and Brookvale. Contact us.

This blog focuses on arthritis-related diseases, healthcare in general, and our Connected Care philosophy.

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