Living in a bubble

A FORFAR woman has been living in a bubble for mostof this year as her struggle against extreme asthma continues.

You may have seen Maggie Balfour, who wears a mask, goggles and gloves at all times, and her husband Jim Lynch as they go about their daily business in the town. This is her story.

Maggie’s problems began as a young child when she had two bouts of pneumonia, one as a baby and another a few years later. A result of this was a lifelong susceptibility to infection including bronchitis and pleurosy.

A series of chest infections came late last year and Maggie has never really recovered from their effects.

As Maggie is also registered blind due to macular degeneration and extreme myopia (short-sightedness) it became too dangerous for her to leave the house over the course of last winter. Then in January, she picked up a particularly potent head cold virus which developed into pneumonia within just 48 hours.

Due to Maggie’s fear of picking up hospital acquired infection, Jim did his best to nurse her from home with the support of her doctor’s practice. However, it soon became clear that she was not getting any better.

It got to the stage where Jim needed to get her to the hospital. Once there it became clear that she was having trouble with normal steroid treatments and despite the constant medical attention she still faced breathing difficulties and frequent asthma attacks.

Maggie was released from hospital on March 6 and from then, Jim said: “The difficulties escalated.”

As an asthmatic, Maggie has been given a peak flow chart to keep track of her condition. It was thanks to this chart that Jim began to notice some serious anomalies. While the steroid treatment in her inhaler should have made her better it was in fact making her much worse.

Jim said: “Once she had taken the steroids her peak flow collapsed and never fully recovered. It dropped down to 120 when it should have been nearer 420. Gradually she would begin to recover until her next dose with the inhaler and then it would drop straight back down again.”

As an experiment, Maggie stopped taking the inhaler completely and within 24 hours her peak flow had gone back up to 420. After a further two puffs of the inhaler it had gone back down to well below 200.

The respiratory consultant agreed that the steroid treatment was causing Maggie big problems and so a discontinuation of all steroid treatments was sanctioned.

Maggie’s situation may be unique in the sense that very few, if any, people across the world have this particular problem with steroids. This has made it very difficult to treat Maggie’s extreme case of brittle asthma. Jim said: “Losing the use of steroids lost the cornerstone of treating asthma so Doctors will have to find other ways to treat it.

“Tablets to control the condition were rejected by her immune system and caused some extremely serious side effects.

“She was then put on a drug used to treat COPD patients but the side effects were so severe paramedics were called to the house.

“After that she was put on a tablet which aimed to avoid acid reflux - something that can put a lot of pressure on the lungs - and she almost died. Her whole body was swollen and it took paramedics one hour and seven minutes to bring her back from the brink.”

Since March 6, Maggie’s immune system has been working overtime which has resulted in various difficulties for her.

Her sense of smell has been heightened to four times that of a pregnant woman which has lowered her tolerance levels for various substances and her sense of taste has also been distorted in favour of man made chemicals. This had made the list of things Maggie is allergic to expand at an alarming rate.

Among her list of allergies is traffic pollution, cigarette smoke, PVC (vinyl), soft plastics, many prescription medicines, household cleaning products, make-ups and shampoos.

Perhaps her biggest risk as the months progress towards winter is the cold weather which may trigger an attack if the temperature drops below 10C.

Recently her body has also rejected antihistamines making her even more exposed to the symptoms of her asthma. In order to help Maggie try and have as normal a life as possible, Jim ordered a Mouldex 8000 series mask with the highest spec possible which filters the air to make it completely clean. Maggie’s mask is made from highly advanced rubber called ‘Kraton’ which is also used to protect people in extremely hazardous atmospheres.. It removes 99.99% of dust and 100% of chemical odours. It is this mask that helps keep Maggie alive and allows her mobility outdoors.

Due to the overcompensation of her immune system, her brain has refocused her sense of smell to allow her eyes to smell the environment too. Within the last two weeks she has had to start wearing goggles as part of her protection.At home, Jim enlisted the help of Swedish company BlueAir to install two air filtration control units within their home. The units remove 99.97% of everything that causes Maggie problems including odours and provides completely clean air within their flat. The air in the flat can be changed up to ten times an hour if Maggie is having problems breathing but it is usually changed around seven times.

Maggie also suffers from Idiopathic Urticaria, which is 1000 times worse than hot flushes and which has the added pain of hives. Maggie said: “It makes my whole body burn, it’s like pins and knives jagging into me.” On top of that she also has to contend with Dermotographism which results in pain and extreme redness on the skin.

Despite her hardships, Maggie is doing the best she can to continue living a normal life but one of the things she is finding the most difficult to deal with is the ridicule and abuse she faces while out and about.

She said: “I have had people standing laughing their heads off at me and sadly it’s mostly adults. I don’t want to be made to feel like a freak. This gear keeps me alive.”

Jim added: “We are asking our community to help us. I’d prefer not to ask but I feel that I need to. Maggie should be able to feel safe in her home town without being treated badly.

“I would like our community to cut Maggie some slack. She is a wonderful woman and she deserves to have a life and a degree of freedom - that’s all.”

Just living day to day is costing the couple very dearly with the running costs and maintenance of equipment extremely high.

Jim said: “These ongoing costs are being met from state benefits and no other source.

“This is how benefits should be used and Maggie and I are very grateful for the money that we receive.

“However, Maggie has recently become allergic to polyester, polyamide and acrylics.

“This is a disaster as winter approaches, almost all of her wardrobe has become unwearable.

“To keep her warm and safe we need to replace her clothing with 100% cotton fibres. To this end, I ask for your help.”