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My Personal History with Eczema
In 1963 I was born with all my fingers and toes and a full head of hair. Another bouncing baby girl, much to my parents delight. Within weeks of my birth it became obvious to my parents and the pediatricians at the time that not all was quite as it seemed. I was born with Atopic Eczema.
At the time of my birth, little was known about this skin condition beyond that it was exacerbated by contact allergens, such as grasses, pollens, soaps, detergents etc. and the treatment was much the same as it is today with the use of topical (applied to the skin) and oral (taken by mouth) cortisone preparations; as well as antihistamine drugs to reduce the itching; Aqueous or Sorbolene creams as moisturisers as well as synthetic, petroleum and tar based bath additives.
This worldwide disease, has, in Australia alone, tripled over the last 10 years. Yes, this is a disease, an auto-immune disease; an inflammatory and degenerative condition; a debilitating and potentially life threatening illness.
There have been periods throughout my life when I’ve been able to do little more than lie on my bed in cruel pain and desolate tears and hoping not to stick to the bed sheets. This disease becomes particularly debilitating once you are looking toward your 40’s and beyond and have been using cortisone preparations and medications for the most part of your life.
Since leaving home aged 16, I have been on the search for ‘a cure.’ The first 10 years of my search was spent with GP’s and skin specialists dispensing topical cortisone creams and ointments as well as oral cortisone to stave off inflammation and rashes, along with ill-thought-out advice and often a hefty consultation fee; some even suggesting I might be a little neurotic - especially when I questioned their advice and information! I endured many treatments throughout my life including scratch-testing and de-sensitising, copious amounts of cortisone creams, courses of oral cortisone, injections of cortisone, the wet bandage treatment in hospital (which for me was brutal), the PUVA box which can only be used short-term because of direct exposure to mostly artificial UVA and UVB rays.
The 'Too Hard' Basket
I have undergone all the available treatments for atopic eczema none of which offered successful long term results (including overall good health)- but most of which offered harmful and life threatening side effects.
One day, when I was in my late 20’s, my Doctor (at the time) told me “Trish, western medicine has nothing more to offer you.” It was a crushing day. I was angry and distressed and overwhelmed by the prospect of what lay ahead of me. By this time I felt as though I was allergic to everything; not just hayfever, airborne and animal allergies alone, but also full blown food allergies as well. All of which exacerbated the eczema. My list of foods to avoid grew into food groups! By now I was allergic to all Dairy products, all Wheat and Gluten products, Eggs and egg products, Peanuts, a small assortment of fruits and veggies and then red meats.
I felt very alone and afraid of my future. By the end of that week and after much sorrow and many tears it also became the time that I decided I would no longer allow doctors or this disease to control my future; it was time to take personal control over the direction my health and well-being was heading. It was time to start the journey toward natural good health.
For many years I sought out Alternative Therapies. Some therapies did not suit me or my condition and other Alternative Therapies are my current lifestyle. There were, however, times throughout that period where I fell back into the use of cortisone preparations, knowingly and unknowingly. Lack of knowledge, lack of support and fear held me back for many years.
In March 2002 my body finally gave in to the long term use of oral and topical cortisone preparations, antihistamines, antibiotics and other prescription drugs and I experienced a complete collapse, both physical and emotional. My GP recorded my condition as Severe Degenerative Exfoliative Eczema.
Physically my endocrine (hormonal) systems were under a great deal of stress; other organs such as my Liver and Kidney were in bad shape and heading toward failure as well, my Stomach and Digestive System were also a mess, damaged from years of cortisone medications, antihistamines and bad eating habits. My Heart and Lungs were affected and under chronic stress. I was suffering many of the symptoms of Cushing’s syndrome - thus the collapse.
The condition of my skin was horrendous. It was papery thin, open and raw and itchy and burning and weeping and bleeding; the skin from my head to my toes was severely degenerated. The itching and intense pain was interminable and very distressing. The only relief I got was when I fell into an exhausted sleep for a few hours each day. Emotionally, I felt stripped of self esteem and self-confidence and was unable to leave my home for many many months. It took a great deal of courage; a lot of research; the compassionate support of my family; and most importantly the unconditional love and support of my partner - to make the decision to be finally cortisone free and find a way to nurture and heal my condition and maintain long term good health – Naturally.
So here I am – 2013. It has been 11 years since I first collapsed. It has taken years of literal blood, sweat and tears to rebuild my health, one step at a time - without the use of cortisone and mostly without the help of doctors and skin specialists. I have been a student of this condition all my life and have learnt most of what I now know in these last 10 years and I am still learning. Each and every day I am grateful for the health that I have and the inquisitive mind I was blessed with for without that I never would have started asking questions and opening doors to a whole new world of information. I can't say it hasn't scared me at times to move out of my comfort zone and tackle this head on, however the results, the improvement in my health and my skin help me overcome those fears.
The underlying factor in all this, I believed then and still do now, is to build up the strength of my Immune System above and beyond what I was originally born with.
At the moment my condition overall is pretty good. In as much as I am still dealing with eczema and allergies, I have it under control. Change of mindset and lifestyle have been and remain important factors in dealing with this condition and I find myself to be much healthier body, mind and soul.
A strong and supported Immune system is better equipped to deal with inflammation and allergens.
The Inevitable Disclaimer!
I make no claim to be a Physician or Health Care Worker, I am someone like you or your child who lives with Eczema and have since birth.
I do not advocate that you discontinue your current treatment. You must be very careful when coming off cortisone - it can be dangerous if you just stop taking it cold turkey. Talk to your doctor or a health professional about how to wean yourself off this drug, if that is your choice.
You can combine both western and alternative medicines for a clean healthy lifestyle. It is important that you do not put yourself or your child at risk when dealing with this disease. It can be life-threatening when left untreated or neglected. If you are using cortisone creams, you can combine that with the use of a natural moisturiser (instead of sorbolene) to help keep the skin hydrated and nourished.
I do however advocate self education about your illness, self education about prescription medicines whether topical or oral; self education about the ingredients used in medications and the products that are on your bathroom shelf right now and what it means to the health of your skin. Don’t rely on your doctor for all this information, he does not have all the answers, if he did, we wouldn’t be right here right now.
Just as your doctor or specialist does not have ALL the answers, nor do I. The best place to start looking for the answers is with you. Get curious, ask questions, go looking for the answers, and start looking for alternatives. They are available; YOU just need to take that first step. You are well within your rights as a patient to ask for your doctor’s full support of your use of natural therapies as a part of your overall and ongoing healthcare. Legislation has been passed in Australia supporting the Patients’ right to the use of Complimentary and Alternative Therapies. Modern Medicine and Natural Therapies really can work together.
I am certain that the combination of quality natural and nurturing products for your skin; complimentary therapies; a nutritious and immuno-supportive diet; an allergen free habitat and; the support of your doctor and those of like mind and situation, will offer you great improvement to your condition and greater management of your disease.