Not a celebration (28.02.2019)
The last day of February each year is a special day; international Rare Disease Day. A day to raise awareness of all rare diseases. Also, as I’ve come to realize since last year, a day to honour the patients who didn’t make it.
Often children, because half of all rare diseases affect kids.(1) Of course, the impact of a rare disease on a child is felt by many; their parents, siblings, extended family, and friends, as well as everyone who helps look after them in hospitals & clinics.
It’s also a day to consider all the patients who are still struggling to get a diagnosis. People who know that something is wrong with their body, their health – but don’t yet know what.
Then there are all the rare disease patients who’ve been diagnosed, yet are still struggling. Because finding – and then getting access to – treatment for a rare disease is often very difficult.
A specific treatment might not be offered in their area, or might not be covered by health insurance. With rare diseases, there often isn’t any ‘treatment’ at all; no ‘standard of care’, no approach that doctors agree is best.
To make all this even more challenging, even patients with the same rare disease can have different symptoms:
“Over 6000 rare diseases are characterised by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.”(1)
This is frustrating for everyone involved with rare diseases; caregivers, doctors, patients, nurses, researchers, therapists, and so many others.
In my own rare disease journey, this continues to frustrate me. As with so many other rare conditions, there’s no cure – and it’s notoriously difficult to treat CRPS once it has become entrenched (or permanent).
It’s well-accepted that each patient presents differently. There’s a long list of symptoms of Complex Regional Pain Syndrome (CRPS), and patients will have different combinations of them – at different levels of severity.
To add more confusion, this condition is still referred to by its old name – even by physicians! – Reflex Sympathetic Dystrophy (RSD). So we don’t even have everyone on the same page in terms of its name!
Despite all that, I’m lucky; for several reasons. First off, my condition isn’t terminal. Technically it affects only my right arm & hand, but in reality it impacts my entire life; and it could start to spread again, at any time, but that’s a topic for another post!
The city near which I live has not just one, but two medical schools. This means that we have a good number of specialists & researchers right on our doorstep. Or within an hour’s drive, if the traffic’s not too bad.
Each of these medical schools runs its own network of hospitals & research institutes. This means that we also have access to 2 different university healthcare networks, both running under our provincial health insurance plan.
Which means that in-hospital treatment is at no cost to patients; our health insurance program, for hospital care, is paid for using tax dollars.
Luckily, I was accepted as a patient at the Pain Management Unit (PMU) at one of these university healthcare networks. The specialists there understand the impact of CRPS, on a person’s entire life.
It’s important to point out that the wait time, to be accepted at either of these two university-hospital PMUs, can be up to 5 years. Yet my PMU started treating me within 3 months of my referral, from another hospital. I’m told I’d have been seen sooner, had my referral not been sent during the university’s summer break.
This type of multidisciplinary PMU has been key in living with CRPS, which causes excruciating neuropathic pain, as well as joint pain. I deal with up to 7 different types of pain each day.
Most patients don’t have access to this type of dedicated pain clinic; anaesthesiologists, nurses, physiatrists, physical therapists, psychologists, rheumatologists, and other specialists – all involved in helping individual patients.
To be clear, this isn’t a “cure”. As with many rare conditions, there is no cure for CRPS. All we have are tools – or treatments – to make our lives less difficult, less painful.
And that’s not enough; particularly for rare conditions affecting children, or the rare diseases which are terminal.
The aim of Rare Disease Day is, in large part, to get this message out. So thanks for reading, and please feel free to share!
(1) The European Organisation for Rare Diseases (Eurodis). “What is a rare disease?” Online. Accessed 28 Feb 2019. Web: https://www.rarediseaseday.org/article/what-is-a-rare-disease