Friends looking to help other rheumatica sufferers

A NORTH Tyneside woman has helped launch a new support group for people suffering from two life-changing diseases.

Margaret Wright, 61, from Cullercoats, was diagnosed with polymyalgia rheumatica (PMR) in 2006 and now she is helping fellow sufferers by becoming involved in PMR&GCAUK North East Support, a new voluntary organisation she set up with friends Pam Hildreth and Mavis Smith.

Margaret said: "I decided to get involved in the group because I believe that more can be done to help those living with these terrible diseases.

"I want to use my personal experience and what I've learnt through living with the disease to help other sufferers and give them the support they need."

Pam, 63, from Saltburn also suffers from PMR and Mavis, 72, from Gateshead, was diagnosed with giant cell arteritis (GCA) in 2007.

Both diseases are inflammatory rheumatic conditions which affect the muscles, causing severe pain and stiffness.

GCA sufferers also have an increased risk of irreversible blindness or having a stroke.

The main treatment for both conditions is steroids, but they come with side effects including depression, weight gain and brittle bones.

In most cases, the diseases have no known cause or cure, and they can dramatically destroy the quality of life for thousands of people over the age of 50, especially women.

Before her diagnosis, Margaret, a former trainer for Northumbria Police, led an active lifestyle, enjoying walking, sailing and abseiling.

But because of the severe pain caused by the disease, simple daily tasks became a battle.

She said: "All of the activities I loved completely stopped because of the PMR.

"The pain was so bad behind my knees I found it hard to walk, and sometimes I needed help just to get out of bed.

"Fortunately, I have a fantastic rheumatoligist on hand and I can feel the quality of my life improving."

PMR&GCAUK North East Support was launched last week at the Centre for Life in Newcastle and was attended by more than 100 members and medical professionals, including rheumatologists, dieticians and pharmacists.

The group also received funding from the National Lottery which helped them create a website and produce the DVD You Are Not Alone, which is for newly diagnosed patients.

Dr Margaret Dayan, consultant optomologist at the RVI in Newcastle, was a guest lecturer at the launch.

She said: "I thoroughly enjoyed the launch – it was great to be surrounded by such positivity and energy.

"I particularly valued the opportunity to talk to sufferers informally as I now feel as if I have a much better understanding of the issues they face.

"I hope the DVD will help patients to cope with these difficult diseases, provide them with information to understand and manage their treatment and give them the confidence to ask questions."

After the success of the launch, Margaret's hoping that PMR&GCAUK North East Support will continue to grow from strength to strength.

She said: "The next step is to look for funding for research into better medication and possibly a cure.

"We're also aiming to set up a dedicated telephone helpline service and another support group in North Tyneside."

Visit www.pmr-gca-northeast.org.uk or e-mail pmrgcafightersne@googlemail.com