Website To Aid Those Hit by Rare Disease
A Dundee woman who set up the only support group in Scotland for a debilitating disease is now planning a website to help the housebound, writes Marjory Inglis, health reporter.
Jean
Miller (73) finds everyday activities exhausting due to an inflammatory condition
and says meetings of the support group last barely an hour because people
are too ill for more. She also hopes another support group might be set up
in Fife.
The Tayside Polymyalgia Rheumatica and Giant Cell Arteritis (PMR and GCA) Group meets once a month in Dundee Parish Church (St Mary’s) but rarely sees more than half the members owing to the debilitating condition.
She said people in such pain and who are ‘unreasonably tired' needed support but were often not fit to attend meetings. A website would provide a link and other information to those unable to get out and about.
“There is no known cause and no known cure,” she said. “It is horrible.”
She said the condition affected people differently but every case was characterised by early morning stiffness. Her own condition was diagnosed seven years ago after she went to a doctor thinking she was having bad flu symptoms and was suffering from “absolute unreasonable fatigue.”
A blood test and further tests led to a PMR and GCA diagnosis and long-term curtailment of activities. Getting up in the morning is the most difficult task due to stillness, although the condition does appear to be less severe at sonic times than at others.
It can be helped with steroid treatment and she says she now has very little pain and, although the exceptional tiredness remains, it is not as bad as when she was first diagnosed.
“My husband was terribly good and brought me breakfast in bed. I would get up at 10.30am and could move a bit better by then and have a shower.
“‘Then I would have to sit down for 15 minutes before I could dry myself because I was so exhausted. I’d have to sit for quarter of an hour I was able to get dressed.”
There is a lack of research in to the condition. “I think there are three reasons for that. You don’t usually get it under 55 so you are not in the workforce so there is no incentive and no kudos in finding a cure, it is not life threatening. The other thing, which is changing, is we are a generation brought up not to complain.
“The first shock is you have it and never heard of it. The second shock is you don’t get better next week.
“I am doing very well at the moment but I’ve had good spells before. You can get down to a low dose of steroids and then it flares up again.”
As well as planning a website, to be running hopefully by April, she has been asked to talk to rheumatologists and other members of the team that looks after PMR and GCA sufferers in Fife.
Anyone interested can phone Mrs Miller on Dundee (01382) 778596.
Source: Republished by kind courtesy of 'The Courier'.
Date: 18th April 2007.
Disclaimer: please note that this website does not have any official medical authority.
