|Year : 2020 | Volume
| Issue : 6 | Page : 217-219
Conquering myositis, beyond remission
Amber OConnor1, TG Sundaram2
1 Breast Cancer Australia, Perth, Australia
2 Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India
|Date of Submission||07-Jul-2020|
|Date of Acceptance||08-Aug-2020|
|Date of Web Publication||18-Jan-2021|
Dr. T G Sundaram
Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow - 226 014, Uttar Pradesh
Source of Support: None, Conflict of Interest: None
Akin to a stowed sailboat, limiting management of chronic illnesses such as idiopathic inflammatory myopathies (IIM) to diagnosis, investigations, and drug prescriptions, is like leaving the seas unchartered. The importance of holistic care, including psychological and social support, cannot be overemphasized. In the face of adversity, patients seek refuge in friends and kin for emotional support. In such times, mutual support from others with common experiences has great potential in improving management. In this era of borderless e-communication, online patient communities are paving the road for wholesome and holistic care to bring about a positive change in patients' lives. Through this interview with Amber O'Connor, who not only survived, but conquered IIM over 16 long years, we take you through the oft-ignored realms of patient awareness, education, support communities, the power of being understood, and the transformative effect these little things can have in enriching patients' lives.
Keywords: India, international business machines, myositis, patient perspective, patient support group
|How to cite this article:|
OConnor A, Sundaram T G. Conquering myositis, beyond remission. Indian J Rheumatol 2020;15:217-9
I'm preparing all documents for my funeral, etc., should I not survive my four-month cruise. My memory is really failing me. I would love to be able to prioritize this task, but I'm dealing with all kinds of problems with my house, after it was flooded with water and a lot of it was damaged. I have a very long list “To Do” list with practical tasks and visas to organize.
I had known Mrs. Amber [Figure 1] for only 2 months and she was obviously having a rough time. However, despite all her troubles, I felt she had developed a connect with me.
Life is unpredictable, at the best of times. No matter how hard it hits you, it may lead you to find solace in the unlikeliest of places. And here she was, a 68-year-old from Perth, Western Australia, opening up to a 30-something doctor from India. Her only connection to India being a vacation to Rajasthan, three decades ago with her husband. She did not ask help, nor did she crave sympathy; this was something deeper. She wished to bare her soul, for catharsis transforms tragedy into virtuous dispositions. And bare she did, in this candid interview which bordered onto the realms of the social, the psychological and the metaphysical.
Hi, Amber. Can you please introduce yourself? Formally, for the sake of our readers.
Hi Latika. I'm Amber O'Connor. I'm 68-years-old and am a retired psychotherapist and university lecturer from Perth, Australia. My husband, who is now no more, and I used to live in a four-acre rural property in the southwest of Western Australia. Apart from my day job, I'm extremely passionate about travel and photography. My life took a turn for the worse 16 years ago, when I was diagnosed with Myositis, and believe me, I have ridden my share of high seas.
Can you explain how it all started? When did you realize something was really wrong?
It started when I was 52, 16 years ago. Breathlessness, chest pain, difficulty getting in and out of chairs, difficulty climbing stairs or slopes. I would have horrendous muscle pains in my quads. I was not able to recover after routine daily activities. This was all very sudden and I was going through a really high-stress period. Then, I started falling like a tree in the forest. Boom! From top down to always landing on my hips.
Hence, how long did it take for you to get your diagnosis?
That was especially hard. I was put into hospital 3 times over a 6-week period and was given a diagnosis of myocardial infarction each time. I had a nagging feeling, I did not have a heart attack but with the family history of my father having Unstable Angina around the same age, I was hospitalized for 3 weeks and was on heart meds for a year. My life had come to a grinding halt, literally. It wasn't until I really jumped up and down in a hospital clinic and insisted on further tests, did I get an EMG and a muscle biopsy in my upper arm. This was done by Prof. Frank Mastaglia from the Neuromuscular center in Perth. You might know him; he is world-renowned for his work on IBM; he is more or less retired these days. The diagnosis came back as PM. I was quite happy with it and realized I wasn't going to die from it, any time soon.
It seems like you have played an active role in the patient support group for myositis in Australia and many other parts around the world. How did that thought come about?
Initially, I was not aware of any support groups online. They were certainly not there in the southern hemisphere. The only way I could have known was through the medical system; if any of my doctors had recommended them to me, and there was no such network in place. So, I was mostly “alone” with my diagnosis until we moved to Queensland in 2008. By that time, I was visibly walking with a gait and could not lift or carry things. I was on prednisone and methotrexate at that time. My baseline CK levels were 1750 and have not been higher since. In 2014, I joined a UK group online and they suggested I start an Australasian support group. I didn't have a clue, how to do anything like that, but I figured it out because of the desperate need. In 3 weeks, I had Myositis Australasia, up and running, hoping to also capture the Pacific Islands people and those in Africa. Basically, I targeted most of the southern hemisphere, because nobody at that time was dealing with it. I carefully selected my team of admins from all major time-zones around the world, so we could offer 24*7 support. Six weeks later, we had developed a really good quality website. By the end of 2014, my husband and I visited London to meet the UK admins and members. We then drove around Europe for 5 weeks. Sadly 5 weeks after returning down under, my husband, 72 at the time, passed away. We were both at that time, caring for my 93-year-old mother for the past 8 years, who was suffering from Alzheimer's disease. My mother too passed away, 5 weeks after him, which was more of a relief from her miseries.
This must have been an emotionally overwhelming period for you. How did you get through that period?
Finding myself alone after doing 6 months of paper-work and estate management, I took myself on a solo trip to the US. I needed to know what my capabilities where; I was using a walking stick, walking around the house, but I needed a scooter for longer distances. I met up with the US members of my group and their admins. We felt the name “Australasia” was holding us back from growing in numbers and hence changed it to Myositis Support and Understanding, and that's how it remains today. The numbers rapidly improved after that; branding is so, so important. Our members are from places as diverse as Europe, Africa, Southeast Asia, including a dozen from India.
You have done remarkable service for patients of myositis worldwide. How has your engagement with the Myositis patient support groups helped you at a personal level?
Support. If not for all the members in my Myositis Support and Understanding and the UK support group posting to me, throughout the day, replying to all the photos I send and checking on me every day, I couldn't have gone through this myself. I made it a very myositis-based blog with photographs of toilets and hand-rails and accessible rooms. They motivated me to get through the whole ordeal. I honestly did not think I would come back alive from such a trip, and I really didn't want to because I didn't want to face what I had to, alone.
Photography is another hobby, you follow passionately. That must have come handy during your travels. And your blog has a very interesting photos section.
I am a very keen photographer. So, I set up a blog to help people with mobility issues to find ways to continue traveling. I posted hundreds of photos of all my challenges and hopefully, some person, in another corner of the world, can learn from my experiences. I also enjoy gardening and spending time with my grandkids.
How has knowledge acquired from the support groups, helped you understand your disease better?
One aspect of myositis, often overlooked by doctors, is the environmental aspect of the disease. The place we lived in at that time, was formerly a 140-acre apple orchard. There were chemical residues in the soil, in the fence posts, and we had poultry, goats, sheep and cows, which we ate. We also had vegetables and orchard, all in contaminated soil, unbeknownst to us. Our neighbor had a tomato farm, and all the drifting chemical sprays would come into our place and we thought nothing of it, until I started to break down. Just a word about mold. We were renovating our 100-year-old homestead during the 1980s. So, we pulled down all the plaster ceilings, and goodness knows what was in that mix. No one wore face masks in those days and our bathroom was black with mold because we didn't have a window in it.
Then comes the small issue of second-hand smoke. I was tested by an environmental scientist and an immunologist and cigarette smoke was found to be one of my biggest contaminants. I was teaching, where there was a staff room of 20 members and 12 of them smoked heavily in a closed room, with the windows all closed because it was a very cold place. These were the triggers for the breaking down of my immune system-the chemicals and severe stress.
My biggest stress was that I accidentally became pregnant in 1985 when my kids were 12 and 10. I became like a lifeless rag doll within a few weeks. Doctors advised that my pregnancy be terminated. They had no idea what was wrong with me, except that it was serious. I couldn't shower, I couldn't get out of bed, I couldn't dress myself, nor could I hold a knife and fork. Once my pregnancy was terminated, much to my sadness, I immediately recovered. None of us expected that result but in the end, that was what happened. I kept that piece of information to myself, never knowing what it was supposed to mean. And from the many support groups I'm admin of, I came to realise that a lot of women develop PM or DM, during or after pregnancy. You'll have to be silly to not see a pattern going on here. The other main cohort of female members of the group are women diagnosed during or after menopause. These are the 2 main cohorts for women. I was 52 at the time of my diagnosis and fell, right into the postmenopausal category.
You are a very positive person. Have you ever been weighed down by your diagnosis?
You see how I told you, I wanted to explore what my capabilities where. I did not say, I wanted to know my limitations. Because I did not think I had any limitations. I saw myself as a person with mobility issues and I refuse to call them limitations. The answer to your question is sometimes, yes, but the support groups I am part of, are what have got me through some really challenging times.
What is your vision for your support group?
My vision, when starting this in 2014, was to join up as many patients of myositis, from around the world as possible. My focus has always been holistic, to create a huge extended family, who with one or two clicks of the mouse, could have instant support from anywhere in the world, from the only people who know what this disease feels like, and its many varieties. The sharing of our individual experiences quickly led to a feeling of self-empowerment. Patients were able to ask better questions off their specialists. Confidence improved immensely. In our group, we deal with issues like grief, coping skills, loss of identity, feeling of helplessness, relationship breakdowns and fear. We intend to help people find their sense of purpose. Our aim for all the support groups, is to have a network with a positive focus on how to live with a neuromuscular disease, always BE the person you wanted to be, not wear the disease as a label and help people remain independent for as long as possible. I went on the US trip alone, without any drugs or a carer, and only then did I realise, that I was in this on my own. I could keep myself alive. My wish out of all this, with a cohort of around 4000 patients around the world, is for researchers to study us. We, at Myositis Support and Understanding, have a large and detailed database, which is a rich source of material for someone to do a study on.
Thanks a lot, Amber, for the interview. I'm sure, anyone reading this, would be inspired by your body of work, and zeal for life.
Amber's words remind us that amid the busy pace of our clinics, it may be worthwhile to stop and ponder. While chasing remissions, and marching on to metrics and indices, a softer relook into the patient's soul should be every physician's goal. Comprehensive care for chronic diseases extends well beyond prescriptions and pills. Empowering patient is a long-forgotten goal. The responsibility to help them lead a life of dignity and purpose lies equally with the physician, family, and friends. Collaboration with patient support groups has helped identify predictors of health-related quality of life and trends in medications usage in IIM., As caregivers today, we must vow to motivate our patients to take the lead and direct their life in the direction they envision for themselves.
The author would like to thank Dr. Latika Gupta, Assistant Professor, Department of Clinical Immunology and Rheumatology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, for facilitating communication between Mrs. O'Connor and me.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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