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World Ankylosing Spondylitis Day

Media Release


ANKYLOSING SPONDYLITIS
It Could Surprise You!

Having trouble pronouncing Ankylosing Spondylitis (AS) which is a form of arthritis – then imagine after years of undiagnosed pain, hearing this diagnosis.

May 4th is WORLD AS DAY


Imagine then being a mother in your mid-forties with 3 daughters aged between 8-14 years and told you have AS after 8 years of pain. The sheer lack of support fear, frustration and wondering where this will all lead. This is Lynda’s story.

Lynda lives with constant pain and need to take medication to help her get some sleep. That was fine until her GP told her the prescription was addictive!

AS typically starts in young adults, but is often overlooked as the symptoms mimic back pain or sports injuries. AS usually occurs in the spine and left untreated can cause the spine to fuse.

Sandra Kirby, Chief Executive of Arthritis New Zealand says, “Lynda is fortunate because as yet she appears not to have any joint fusion.

Lynda’s current treatment is medication (methotrexate a drug used in chemotherapy), physiotherapy/hydrotherapy, prescribed orthotics and daily exercise of yoga or aqua jogging. Taking pets for a walk is also therapeutic
.
Interestingly Lynda’s father also had AS but she doesn’t have the HLA B27 gene which is frequently found in those with AS.

Kirby notes that referral to a rheumatologist, a specialist in arthritis, is essential for a diagnosis of AS.

“With effective treatment AS can be well managed. Exercise and pharmaceuticals play an equally important role in managing AS. Modern biological therapies for AS are now used for patients where other drugs no longer work. These new treatments can prevent spinal degeneration, which is irreversible.” Said Sandra.

Lynda will join other 17 Arthritis Advocates in Auckland this weekend where they will share sessions on
• Support for the newly diagnosed
• Learning advocacy skills
• How to be an effective advocate (with MP Peseta Sam Lotu-iiga)
• Communication


ENDS

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