Lauren Vaknine was just two when she was diagnosed with Juvenile Rheumatoid Arthritis. Her parents refused the steroids doctors were prescribing and opted instead for alternative medicine. Today at 30, as others her age with the same disease have hip and knee replacements, Lauren’s bones are those of a normal 30 year old. Her story is a heartening testament to the power of holistic therapies
A few months before my second birthday, my parents noticed swelling around my left ankle, which, within a few days, spread to my right ankle. They took me to the GP who said it was probably growing pains. The swelling remained visible and seemed to be causing me problems walking so my parents persevered.
Eventually – and after my mother was told many times she was being a paranoid first-time mum – the GP took them seriously and I was booked in for a biopsy. The morning of the biopsy the paediatrician came to see me before the procedure, took one look at me and told my parents I had Still’s Disease, later known as Juvenile Rheumatoid Arthritis (JRA), now known as Juvenile Idiopathic Arthritis – idiopathic meaning no defined cause.
This was 1986 and at the time the only treatment available for juvenile arthritis – indeed any arthritis – was steroids, and in very large doses. Top paediatric rheumatologists at the time were suggesting that this was the best way forward and told my parents it should, in effect, ‘knock it on the head’.
The doctors told my parents that there was a chance that the disease could burn itself out by the time I reached adolescence. But my parents couldn’t be sure that that would happen and though most parents go through a stage of denial at this point where they believe this will, of course happen for their child and it’s best to give them the drugs to help the disease on its way until it disappears, I was lucky that my parents took a more pragmatic approach.
There was no internet back then, so they took themselves to a library (imagine that!) and emerged three days later after having read everything there was to read about childhood arthritis, steroids and other options. No GP, physio, rheumatologist or paediatrician – or anyone else – gave my parents any information about alternative therapies. It was as if they didn’t exist. But my parents kept searching and after much deliberation, decided to give homeopathy a go. And let me stress at this point that they’d never even heard of it before.
My mum was a secretary and my dad was a market trader, so there was certainly no abundance of money. But they saved all they could and took me to a homeopathic dietician in Harley Street. They were not made aware of the fact that homeopathy was offered on the NHS at the Royal London Homeopathic Hospital. The dietician looked for food ‘sensitivities’ and discovered a few within me. Food sensitivities should not be confused with allergies or even intolerances, they don’t show up on tests and can usually only be discovered through kinesiology or other forms of complementary therapies, but can cause our bodies problems without us ever knowing what food it is.
If a person’s weakness, for arguments sake, is headaches, certain foods would cause headaches. With me, we learned that the foods I was highly sensitive to, would cause inflammation to be released and cause a flare in my joints. The dietician put me on a strict diet of no gluten, dairy and acidic products – which in 1986 was pretty difficult for a two year old as there were no substitutes like today. He also gave me a homeopathic remedy and after a month, my parents started noticing improvement in the swelling, which by this point was now in both knees and both ankles.
Eventually, we found a homeopath more local to us and I ended up staying at that clinic for the next fourteen years.
Our rheumatologist at the time thought we were mad, and told my mum that she was being a bad mother. Homeopathy was seen as voodoo, despite the fact that it had been offered on the NHS since 1947, another thing we were not made aware of. Doctors in an era as influential in medicine as the 80s were making headway with so many diseases that it seemed to them almost laughable to even consider holistic therapies of any sort.
After a few years of going to a group physio session with the same children that also had the disease I had, difference between me and the rest of them became visible. Most of them were very tired and irritable, a lot of them had puffy faces from the steroids and they just seemed different. The older we all got, the more noticeable it became but the doctors kept talking about coincidences. They also kept saying that if I didn’t take the drugs, my joints would get damaged. The years went on and there was never any damage, despite the one or two flare ups I got a year, yet the other children were all starting to present with joint deformities, hormone problems and organ damage. There were times when my parents questioned their own choices and methods – what parent wouldn’t? – but all they had to do was compare me to the children at our weekly physio to know they were doing the right thing.
We continued with the drug-free route and by the time I started secondary school, the flares were so scarce and so mild that we thought I might have gone into remission.
I’d been diagnosed with an associated eye condition called uveitis when I was three and this was the only part of my treatment that was treated conventionally. I had to administer steroid eye drops to my eyes a few times a day. The uveitis tended to flare more than the arthritis and left me having to have more than a handful of injections into the eye between the ages of 3-12. Although it had been more severe than the JRA, it was monitored closely throughout the years and the flares seemed to subside after a few weeks. However, after I left high school to go to performing arts school, I had a huge flare up in the eye, completely out the blue.
The tests revealed that the eye drops I’d used over the years, along with the years of inflammation in the eye, had caused cataracts and they were in fact quite bad. They couldn’t operate because there was too much activity in the eye and they couldn’t get the activity down because the cataracts were preventing this. It was a catch-22. My ophthalmologist said that if I didn’t want to lose my eye I had to take some strong drugs. They had to get the inflammation down so they could operate.
When you are raised doing something and you know no different, you don’t ever appreciate how great it is. And this is what it was like for me with homeopathy. I didn’t realise that it had kept my bones, joints and organs safe and strong. I didn’t realise how strong it made my immune system. I just took it for granted. I was 18 and thought I was an adult and that I knew best and so I agreed to take the drug. My parents weren’t happy about it but there wasn’t much they could do.
By this point new drugs had been manufactured – Non Steroidal Anti Inflammatories (NSAIDs) and Disease-Modifying Antirheumatic Drugs (DMARDs). I started a chemo-based arthritis drug at eighteen years old, with very mild arthritis in just four joints in my body. Fast forward to ten months after starting the drug; the arthritis was in every joint in my body, literally from my jaw right down to my toes, my liver was damaged, I lost over half my hair and I was in a wheelchair, unable to do anything for myself. I literally couldn’t even go to the toilet on my own.
To explain it to you in simpler terms, ten months earlier I’d be due to play the lead role in our college musical, a show where I was supposed to be doing dance routines and now, my elbows were so swollen that I couldn’t even bend them to brush my teeth or hold the phone to my ear. I couldn’t eat because my jaw was so stiff. I couldn’t grip the TV remote in my hand and I couldn’t even sit up because my hips wouldn’t bend.
There may be some people reading this thinking it was just an unlucky coincidence. It wasn’t. The drug had had an awful effect on my body and left me disabled. Oh, and the inflammation in the eye didn’t go down either so they still couldn’t operate.
My mum pushed me into the rheumatologist’s office in a wheelchair, and after fourteen years of treating me not only did she call me ‘Laura’ instead of Lauren, she didn’t seem to bat an eyelid at my newly-acquired disability, and it made me realise that people deteriorating was normal for her. I didn’t want that for me. She also saw no problem with the fact that a drug had destroyed and damaged my entire body. Her words were, ‘This drug works for 70 per cent of people. You fall into the unfortunate 30 per cent. It happens.’ I decided then and there that not only would I never have this woman – a supposed professor in paediatric rheumatology – treat me again, but that I was not a statistic or a number and I deserved to be treated by someone that could at least have the decency of remembering my name. After that I made an effort to find both a rheumatologist and ophthalmologist that supported my treatment choices.
It seems we have to go through certain experiences to learn lessons. That was my lesson and I learned it the hard way. At eighteen years old I had to find a way to get myself healthy again. Was it even possible? Could all this damage be reversed? I was quite literally disabled from head to toe.
I came off the drug and, at the risk of sounding like a raving hippy, I started meditating, visualising, doing yoga and I went back to homeopathy. I was looking for a way forward that would eliminate chemicals from my system. I saw a therapist who did a range of all different types of holistic treatments rolled into one and although it took me two years, I eventually became healthy again. Not cured or arthritis free, but on the road to that place.
After many years of not knowing it even existed or that it was available on the NHS, I found I could be referred to the Royal London Hospital for Integrated Medicine (formerly the Royal London Homeopathic Hospital) and I started seeing Dr Fisher – the clinical director of the hospital who also happens to be a homeopathic rheumatologist. He referred me on to a few other doctors to see at the same time. These included a homeopathic podiatrist, a dietician, a cognitive behaviour therapist, the insomnia clinic and the fibromyalgia clinic. The arthritis being as severe as it was had left many secondary conditions from fibromyalgia and insomnia to thyroid and hormone problems. I finally had everything I needed under one roof and I didn’t have to pay for it. My parents were literally drained of funds by this point and could not afford another penny.
After five years of being treated there, I started seeing a new holistic therapist, one who used a complete integrated approach by incorporating kinesiology and craniosacral therapy into her homeopathic treatments. Before seeing her I was much better, but I wasn’t arthritis-free and I was determined to get there, despite everyone telling me that I was mad and it was impossible to get rid of this disease, one whose progression cannot be reversed. I knew there was a missing piece, and I needed to find what it was.
It took me many years, a huge amount of hard work and perseverance and a lot of self-educating to find the balance of all things that got me to where I am today, but I’m proud to say I’m in full remission, with no signs of it returning. The uveitis in the eye also went into remission for the first time ever, two months after stopping the steroid eye drops that I’d been on for twenty-six years! I’d had to have the lens removed from the eye in 2006 and can never have that replaced because the steroids had done too much damage to the eye. But thankfully, despite the lack of vision in that eye, I have no more flares.
Out of all the people I’ve met over the years who have had JA and were treated with drugs, I’m the only one with no joint deformities or joint damage, and some of them had arthritis less severe than mine was. I think this raises a few questions about the drugs; why they are administered so freely, why such strong, toxic drugs are given to such young, vulnerable people, and why no one ever considers the ‘other’ route. I advise people to use complementary and alternative therapies as a first resort, not a last. Taking our healthcare into our own hands is of utmost importance.
There were many things – some which seem minor but were hugely instrumental – that got me to where I am today and it really is a culmination of all these little things put together. From obvious things such as diet (I am now totally gluten, sugar and wheat-free and drink fresh vegetables juices at least once a day) and exercise, to less obvious things that I had to learn for myself such as cutting out fluoride and needing supplements such as zinc and magnesium, along with many other factors. All these tips can be found on my website.
I now spend my time helping others find their way in the way that I did. I have become a trustee of the British Homeopathic Association, patient ambassador for the Royal London Hospital for Integrated Medicine and parliamentary ambassador for juvenile arthritis. My lobbying within Parliament focuses on making complementary and alternative therapies more accessible. I speak at medical conferences, UK and European Parliamentary events, exhibitions and hospitals. In 2010 I wrote and published a book about my life with JRA, the lows it led me to but how, ultimately, I overcame it and I am hoping to publish my debut novel this year.
This week is Rheumatoid Arthritis Awareness Week, find out more at the National Rheumatoid Arthritis Society
My Enemy, My FriendBy Lauren Vaknine, £5.99 from Amazon. Follow Lauren @LaurenVaknine
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