June Fraser, United Kingdom
I can actually pinpoint the time when I realised that something was going badly wrong with my health to the summer of 2000. I was 46 years old, and although as a child I had asthma and a lot of ENT problems, by my early twenties I was fit and healthy and never gave my health much thought. I had 3 gorgeous sons and sailed through my 30's and some of my 40's with no significant health worries. In the summer of 2000 life was good, I had remarried and had settled down to a good life, I swam, rode horses, danced and generally was full of energy. That summer started with a slight cough which persisted all summer, I thought my childhood asthma had returned and so I went back to mild asthma drugs. By the winter the cough had become chronic and during January 2001 I became really ill with repeated chest infections. Things were a little better in the summer but the cough never left me and I started to feel run down. I had repeated courses of antibiotics to try and control things but the winter of 2001 was awful, I began to cough up phlegm every morning and at times I felt I could not breathe. My doctor referred me to the local hospital to see a chest specialist. He diagnosed COPD and Bronchiectasis, where some of the lung sacs are damaged and not as flexible as they should be.
I was shocked as I was a lifetime non smoker and always took good care of myself. The doctor prescribed a preventative asthma inhaler which helped a little but still I coughed morning, noon and night. During that year I gradually went from being a fit active person to one who was struggling with life.
My illness peaked in the winter of 2002, when I started a pattern of being rushed to ER with asthma attacks so bad I could not breathe. It was terrifying. Six more of these admissions during winter 2004/5 and by then I was coughing up blood, and convinced I had lung cancer. I begged my GP to refer me to the Brompton, London's leading lung hospital. She immediately agreed as she was as worried as I was that they had missed something in my diagnosis.
I had a very depressing appointment with a specialist who told me I was seriously ill and should give up work straight away. He bluntly told me he didn't know if I would get better or not. I remember going home crying my eyes out convinced I was going to die, and quite frankly by that time I rather hoped I would. I felt so ill that life did not seem worth living.
In April 2005 I was so ill that they admitted me to the Brompton for a week of investigation. Interestingly, just before that admission one doctor I saw remarked on my blood test results which showed incredibly high eosinophil levels. At the time I didn't know what an eosinophil was!
This was my turning point. In that week they carried out every test under the sun. One morning I was sent down for yet another test and was given my medical notes in a bag which was meant to be sealed but someone had forgotten to put on the seal. I dived into the ladies toilets and began to read my notes. In big red letters on the front was written "possible Churg Strauss Syndrome". I had never heard of this and my imagination ran riot wondering what I had. At the end of the week one of the Professors saw me and told me I had a serious eosinophillic disease and that I had eosinophillic pneumonia and that the only treatment was continuous steroids.
I was no stranger to steroids by this time and knew the implications of taking these drugs long term. He also gave me a purple steroid inhaler, a Seretide Accuhaler. This drug was to be my salvation. Within 4 days of getting this expensive drug, my cough eased and I felt a glimmer of hope. However that year was still punctuated with hospital admissions as an emergency patient, constant periods of not being able to breathe and horrendous chest infections. I got to the point where I was constantly on antibiotics.
I then discovered the Churg Strauss Association and researched everything I could about the disease. At this point I was on 11 different drugs, Western medicines with bad side effects but I was so desperate I took everything they gave me.
The following Spring I found out I had heart damage and that the eosinophills had hit my ears, lungs, heart and also that I had an ulcer from the Pred I was taking. I had always been a huge fan of alternative medicine and I turned to every alternative remedy I could find from Chinese herbs and mushrooms to accupuncture and Reiki. I spent a fortune looking for a cure but still I had times of being really ill punctuated by better weeks although never really healthy.
At this point I had a great stroke of luck, a friend introduced me to Margaret, a Polish reflexologist who had an amazing knowledge of all sorts of alternative medicine. I saw her every other week and had Accupuncture in between. Both therapies seemed to be helping. Margaret told me to take Propolis, a bee product, which stops infection. Within a week of taking it I felt better. Since being on this I have only had a couple of ear infections, no chest infections and just mild asthma. My next drug to go in the bin was Lanzarapole, the drug they gave me to stop the Pred from aggravating the ulcer which the Pred caused in the first place. This "Proton Pump" inhibitor made me feel sick, gave me griping stomach pains and a constant pain just below the breastbone. I tried many alternatives and nothing worked. Then I discovered Orange Peel extract which I had shipped from the Usa, more expense but it worked. I chucked out the Western drug and found the pains went away, the heartburn eased and my vitamin B12 levels went back to normal from dangerously low.
My next alternative was Co Enzyme Q10 which I had read was a good one for people with heart failure such as I had. I had been breathless on exertion for months and the Ace Inhibitor drug they had been giving me for nine months had failed to make a difference. Within 2 weeks of Co Enzyme I was no longer stuggling with breathlessness. When I told the specialist he told me it was all in mind and it couldn't possibly have made a difference. I decided I would not be seeing him again. From here on out I decided any doctor who dismissed my new alternative life style was not going to be treating me.
So here I am now in the early days of 2007, working full time running my own business. Before Xmas I worked 90 hour weeks, not bad for a girl who was more or less written off as an invalid 2 years ago!
It's been a long painful journey but I believe by taking charge of my own health and questioning the Western attitude of throwing toxic drugs at everything without regard to the terrible side effects they cause. I know I have to have Prednisolone and despite all my efforts at reducing I cannot get under 10mg without my eos rising. I also rely 100 per cent on the Seretide inhaler which has meant I can control the asthma. I also still take the Ace inhibitor although I am not convinced it helps but I am not stupid enough to chuck out every drug they give me. But from a list of 11 drugs I am now down to just 3 plus my alternatives: Fish Oil, Garlic, Flax seed oil, Propolis, Co Enzyme, a good healthy diet, as few chemicals in my house as I can. I even swim in a chlorine free pool. I need a nebuliser twice daily top open my airways as the damage done is permanent but I think that helps to keep the infections at bay too.
Next month touch wood I will have gone a whole year without seeing a hospital bed. I still go to the Brompton every 3 months for monitoring and my GP and I look at my blood test results every month, I have become an expert in the various blood tests.
My life is almost back to normal and I feel happy with my life again. CSS has changed my whole attitude to life and I no longer take my health for granted. I know I am one of the lucky ones. My Churg never progressed to the Vasculitis stage although I did have pains and pins and needles in my legs for some months. I also know I walk a tightrope and that I could become ill again but now I am armed with knowledge to fight Churg. One of the things which helped in the dark days was Ben Watts story. I read that book over and over again. I had been a big fan of his music and his story was so helpful in filling in the gaps in my knowledge of Churg.
So to anyone just starting out on the dark first days of diagnosis I would say don't give up hope. This disease can be controlled, not cured, but most of us can get our life back if we are lucky. Learn as much as you can and then help yourself as much as you can. Not every alternative medicine works. I have wasted a lot of money on things which did nothing. It's like seeking the Holy Grail, but there are safer things which really do make a big difference.
One day maybe there will be a cure for us. In the meantime I don't intend to let this awful illness rob me of my life again. I'm still fighting it and will continue to do so. It doesn't dominate my life as it used to.
For some of us the outcome is not so good. It breaks my heart to read of patients such Cindy's wonderful little girl Lauren who has a very bad time with the illness. You have to ask why this disease takes so many different paths. I pray that the doctors will find a cure for Lauren and others like her who have been unable to get over the worst of it. That's why I thank my lucky stars that I have come out the other side and got my life back again.