Julie’s marathon battle to publicise condition

Julie’s marathon battle to publicise condition

13 June 2012

A KILLOUGH woman is helping raise awareness of a rare disease, which she recently battled to complete the Belfast Marathon.

Julie Power suffers from vasculitis — an autoimmune disease which affects the blood vessels and the organs. But thanks to the support of her medical team, her family and her walking sticks, she completed the final leg of the marathon.

She now wants to draw attention to a new ‘Route Map’ for vasculitis sufferers from patient-led charity Vasculitis UK — an extensive guide for patients, families, and healthcare professionals, which can be downloaded or ordered from their website.

The vasculitides, a group of often rare auto immune diseases, affect only 15 in every one million people, which mean those affected often struggle to find information on how to manage the condition and where to find support.

Vasculitis can affect anyone at any age and the sooner it is diagnosed and treated, the better; but as they are such rare conditions, some people can wait years for a diagnosis with devastating consequences.

Julie was diagnosed in 2005 with Wegener’s Granulomatosis Vasculitis but had been ill for two years before learning what was making me her ill and what caused her bowel to rupture.

“No-one I knew had ever heard of my condition before,” she said. “This isolation and lack of information led me to start the support group called Vasculitis Ireland Awareness. The group meets every three months and held its first all-Ireland meeting last September where 70 people attended.”

After a prolonged fight, the 47 year-old mother of four eventually had to accept medical retirement from her job in Marie Curie as an occupational therapist, as her joints and some vital organs had deteriorated too much.

“It is very difficult whenever damage is done to the organs as it is not repairable,” said Julie. “Retiring from work was completely life changing for me.”

Now focused on raising awareness of her condition, she was particularly delighted to complete the Belfast Marathon relay as part of this mission, and with the full support of her family.

“Two of my sons helped me across the finishing line,” she said. “It wasn’t too hard as I was on a high taking part and I had the use of two sticks.

“They were all delighted for me when I crossed the finishing line. I am also a member of the Singers’ Circle in Downpatrick and I had a great reception from them.”

Vasculitis Ireland Awareness will be meeting on June 30 between 10am and 12 noon at the Betty Chambers Room, Mc Kinney House, Musgrave Park Hospital, Belfast.

To contact Julie for more information telephone 028 4484 2889 or email wgselfhelp@yahoo.com.