Reflections on Rare Disease Day (07.03.2019)
It’s been a week since International Rare Disease Day took place, and I’ve been reflecting on it quite a lot since then. Until a few years ago, the only healthcare awareness events that really touched my heart involved bioethics; called biomedical ethics in some parts of the world. One of these was Canada’s National Health Ethics Awareness Week (NHEW), coordinated by the Canadian Bioethics Society – of which I’m a long-time member.
That wasn’t because I hadn’t experienced any healthcare issues, but rather because bioethics is my passion. This blog, which I launched back in 2007, was originally dedicated only to bioethics. Despite having lived with a chronic and sometimes life-threatening illness since childhood, I never considered myself to be “a patient”. So I never did any advocacy or awareness-raising for my well-known and seemingly run-of-the-mill illness. These days, my childhood disease is well-managed through a combination of medication and lifestyle choices. I’ve been living with the illness for so many years now that I don’t even think about these restrictions anymore. They’re simply a part of a who I am.
Then, just over three years ago, I fractured my arm and was struck with a rare disease. I subsequently had to fight to obtain a diagnosis for that rare condition. For several months, I was repeatedly told that nothing was wrong with me – despite clear signs and symptoms to the contrary. My requests for a second opinion were dismissed, as was my request to change to a different clinician for follow-up appointments – for the fracture – within a community hospital.
The condition, with which I was eventually diagnosed, causes excruciating neuropathic (nerve) pain; yet at one point I was told by a healthcare professional at that local hospital to “stop exaggerating”. Despite having worked in healthcare and in hospital, I wasn’t able to convince this specialist that something was medically ‘wrong’. Instead, I was dismissed and disrespected – as a patient, as a person – on multiple occasions.
When I finally did receive a second opinion (because of a letter sent to this clinician by the physiotherapist treating me for fracture recovery), it took less than 2 minutes. The specialist providing the second opinion didn’t even need to examine me; he could see the clinical signs from across the room. He asked me a couple of questions, said a 3-letter acronym for the condition to the original specialist – and left. You can read “Google this”; a diagnosis for more on that story!
I found out later that if this disease is treated within its first three months, it often resolves. It goes away in almost 95% of cases that are diagnosed quickly. In cases in which it’s not aggressively treated within the first three months, it can become a debilitating, painful, and permanent condition. But I didn’t receive that second opinion, with the diagnosis, for almost three months. There I was, someone whose career involved the protection of patients’ rights, unable to make myself heard by the one specialist physician who was my gateway to appropriate and required treatment.
At that point, I became someone who thought of herself as “a patient”. And I began to wonder about all the other patients who lack my background in healthcare; were any of them ever able to make themselves heard, for the symptoms of this disease? At that point my unconscious decision to raise awareness, to become a one-person advocate for my new illness, was made. These past three years, I’ve simply been catching up to that decision!
The disease with which I was struck is both autoimmune and neuro-inflammatory in nature, and is considered to be a chronic pain condition as well as a rare disease. So I now raise disease awareness within this 3-way intersection:
- CRPS Day and CRPS Awareness Week, to raise awareness of Complex Regional Pain Syndrome and to help spread the word that this disease’s name changed from Reflex Sympathetic Dystrophy (RSD)
- National Pain Awareness Week (NPAW), highlighting chronic pain as a disease in and of itself in Canada
- Rare Disease Day, an international awareness-raising campaign for all rare conditions
For each of these awareness days/weeks, I create imaging – using photos I’ve taken with one hand (because CRPS affects my right hand and arm) – often with references to disease information and research. These images are then posted on my social media, and are often shared by larger groups; for example the Canadian Pain Society (CPS).
Throughout the year I write blog posts and use social media to share research news concerning CRPS, chronic pain, and rare diseases. I write stories for publication on organization’s websites, and attend awareness events when I can. Last year I was able to attend the annual scientific meeting of the CPS, as a “Patient Partner”, and live-tweeted it as part of the official conference “Twitter Team”.
Last month I had the opportunity to speak to medical students at McGill University, about my disease and my experience as a chronic pain patient. I’ve even used photography, as artwork, to raise CRPS awareness as part of a juried art exposition at a large university health network!
And my awareness-raising buddy is popular in his own right, on Instagram; Max fits into the little pockets of my cycling jerseys/shirts, so joins me on bike rides. Whenever I take him out to take his photo, people will ask about him, and if they’re interested I’ll talk a bit about CRPS.
Here are links to just few of my posts about some of my recent patient advocacy and awareness activities; Medical student talk (2019), Art + Health (2018), Orange for CPRS (2018), NPAW (2018), and Rare Disease Day (2019). Feel free to use the search feature on the blog, to check for others; CPRS and NPAW take place in early November each year, and Rare Disease Day on the last day of February.
Speaking of Rare Disease Day, I attended a fantastic TedTalk-type event at McGill University this year. It was the second annual event, organized by a group of committed medical students who formed the Rare Disease Interest Group; RareDIG for short. They had a cocktail reception in the lobby, and then we moved into a theatre to hear 5 speakers; a mix of patient advocates and researchers, for a two-hour presentation. Here’s Max, counting down the minutes until the start of the talks ‘-)
I’d previously met one of the guest speakers for this year’s event, a few years ago, at a bioethics conference – and it was great to be able to catch up with him for a few minutes before the event began. He’d flown in from out of town just for the event, so my husband and I unfortunately weren’t able to get together with him while he was here; we’d have liked to show him some local hospitality.
After the talks (his was excellent!), he asked me whether I’d ever consider doing that type of presentation. I love presenting, so just said “Yes!” off the cuff. But I’m sure nothing will come of that comment. The calibre of the speakers at this McGill event are just phenomenal; world-class researchers and disease advocates. That is far out of my league, in terms of disease advocacy. I was thrilled just be to able to speak with 25 or so medical students last month – let alone present to an entire auditorium full of people!!!
Thinking about RareDIG 2019, about special events, reminded me of a bioethics initiative I’d launched at work last year, for NHEW. Because during the past three years of my spare-time disease advocacy adventure, I’ve remained passionate about bioethics. For NHEW 2018, a co-worker and I were granted permission to co-organize a series of events at our office. This entire project was our ‘baby’; no one had ever done anything like this there in the past.
Our activities touched on clinical research ethics as well as organizational ethics & compliance, and we also provided some thought-providing examples of other areas in which bioethics is involved. From end-of-life decision making to genetic manipulation to transplantation with animal, lab-grown, or mechanical organs. One very popular example we’d selected was an infographic (illustration) published in Science, showing how scientists today might use technology – in questionable ways – to create an updated version of Frankenstein: “Creating a modern monster”(1).
It was the first time our employer had participated in this awareness week, and we received positive feedback on our NHEW activities. In the lead-up to NHEW, I’d created a set of themed paper airplanes as give-aways; even these were a surprise hit. My co-organizer created all the social media posts, company infographics, and internal messaging – even a game show! It was a fun project to work on with her, and to share with other employees together.
So I’ve been looking forward – for months! – to co-organizing another edition of NHEW at work this year. Not only for the opportunity to work with the same colleague on the project, but also to share my passion for bioethics. By last summer I was already collecting ideas of different topics that we could introduce for 2019; bioethics news and articles that would be of interest to our diverse group of healthcare colleagues. Thinking of ways to top last year’s paper airplane giveaways, with something equally unexpected in an office environment…
But I’ve just realized that NHEW is only a couple of weeks away, April 1-7, and I’m still off work. Even if my doctors let me return to the office the day after my next medical review, at the end of next week, there’s no way I’d have time to be involved in NHEW this year. That’s a real disappointment to me, and I don’t know why it hadn’t occurred to me until today that they timing just wasn’t going to work out.
This post shows the insidious types of effects of so many chronic pain and rare conditions… they can worsen over time, slowly changing abilities and possibilities. Because I’d developed some new – more debilitating – symptoms of CRPS late last fall, my medical team put me on ‘short-term disability’ leave over the winter holiday period; I didn’t go back to work at the start of 2019, when my colleagues did. So I’m going to miss out on co-organizing a project that I’d been looking forward to for months.
At this point I’m in limbo, waiting for a decision on potential surgery, wondering when I’ll be back at work. Keeping a positive outlook, by exercising and by making an effort to get out of the house every day. It’s so important, for mental health, to not become isolated in this type of situation; I went from spending most of my waking hours with colleagues to being alone at home all day. So whether it’s going to the gym, grabbing a coffee with someone, or even running errands, I know that I need to be around other people for at least part of the day – every day.
Luckily this includes the time I spend at the hospital, or with any of my other healthcare professionals. From 0915 to 1230 yesterday I was at the pain management unit (PMU) of my university hospital. Tomorrow I’ll be back at the PMU from 1230 to 1400. On top of that, on other days, I had physiotherapy and other treatments. By the way, I’m in no way complaining about the time I spend at the PMU; I consider myself lucky to be a patient there, where they treat patients with kindness and respect.
Despite having a positive outlook and the support of family and friends, and not suffering from depression (that’s been confirmed by my healthcare team), there are times when I feel extremely sad because of what this disease has taken from me – and the constant neuropathic pain that it causes. Today, realizing that I won’t be involved in NHEW at my office this year, is one of those days. I’m hoping that this blog post will help me get past that sadness, and move on. To have a better day tomorrow.
As always, thanks for reading. If you’d like to connect, reach out on the usual social media!
(1) David Shultz. “Creating a modern monster”. Science. 12 Jan 2018: Vol. 359, Issue 6372, pp. 151. Online. DOI: 10.1126/science.359.6372.151. Web: http://science.sciencemag.org/content/359/6372/151