In search of a healing hand

The internet has become a lifeline for the chronically ill, writes CHRIS DANIELS.

Researching health online can be fraught with difficulty.

Medical advice can be unproven, anecdotal, outdated, designed only to push a product and potentially dangerous.

More and more patients are trying to diagnose themselves online before heading to their GP, raising concerns that they are putting their health at risk.

But for many with a chronic disease, the internet has proved a welcome lifeline, especially where the disease is often difficult to treat, and fairly rare.

Lupus is one such illness, an auto-immune disease affecting around one in 900 New Zealanders, mostly women.

Some of its many symptoms include joint and muscle pain, chronic fatigue and facial rashes.

Because it is relatively rare, has many different symptoms, and is often hard to diagnose, online advice - providing contact with patients and doctors overseas - has been crucial for many Kiwis with lupus.

Auckland woman Bev Lowe was diagnosed with lupus six years ago and has been going online for the past three years, researching the disease and treatment options.

When she started searching, there was little information about her disease around, although this has improved.

"I just started on a search - just putting in the word lupus. There is a wealth of information there, one path leads to another."

One of these paths lead to a "lupus list" - a large e-mail group where people with the disease talk about medical, social and psychological problems.

"These come hand in hand with any chronic illness. Especially for those people at home and limited by mobility and lack of social contact. That's really very, very valuable."

Being online put Bev in touch with hundreds of other people who had gone through the same thing as her - people able to give personal accounts of procedures, drug treatments, the lot.

"Often that is much more useful than what some doctor can give - they give you the personal side of it - not just the technical side."

"I have found that on these lists are some very qualified people - people that often know more than some specialists might know.

"Some of them are both medical professionals as well as having lupus."

While singing the praises of health advice online, Bev still urges caution, advising patients not to rush into anything before talking to their doctor.

The idea is to get as much information as possible, then take it along to the doctor, make suggestions and get a professional opinion.

"It's empowerment - you can take charge of your illness, which everyone with a chronic illness should do - learn as much as you can and take charge of your health, so when you go to your doctor you can make suggestions on medical procedures or drugs."

This was particularly important for a chronic disease, and one so unpredictable as lupus, said Bev. GPs often did not have the time to do a lot of research into a condition that might affect only one or two of their patients.

In one case, Bev downloaded information about a particular hormone drug, that although available in New Zealand, was not known to her doctors.

"I have been able to advise people in the group about medication which is being trialled in the States at the moment and you are actually able to buy it here.

"The doctors know about it, but they won't prescribe it unless you actually push for it and ask for it.

"I went to my rheumatologist, put the research under his nose and I also showed it to my GP. She prescribed it, but warned me that I was taking it at my own risk."

It was a risk Bev was prepared to take, knowing what she did about the drug from her online research.

And it is not just dry medical information and new types of drug treatment that has made the internet such a friend to Bev Lowe and other New Zealanders with a chronic illness such as lupus.

She can find out how others get on with their lives, how they refuse to let their illness take over.

She also gets to find out about the people behind the illness.

"You just look at their stories and see what they have gone through and you can see that they're normal people," she says.

"A lot are not about just their illness, it's about their lives and their hobbies. They just live life as much as they can."

Links


Lupus Auckland

The Merck Manual of Medical Information

US National library of medicine

Centers for Disease Control

WebMD

MayoClinic

Report on how people use the internet for health advice