Vasculitis at Work
Amanda Mackay pictured left, following a recent consultation at the incredible Anne Rowling Regenerative Neurology Clinic.
Today is Rare Disease Day.
The objective of it is to raise awareness among the public and policymakers about rare diseases and their impact on patients’ lives.
The purpose of this article is to draw attention to vasculitis, a rare, debilitating and complex group of autoimmune diseases involving inflammation of the blood vessels. I post this in the hope that by doing so I may help others affected by it. I have suffered from it for some time. It is a very rare condition affecting around 10-15 people per 100,000 of the population but if one takes into account the number of variations that are known about, the fact that historically many people have died from it undiagnosed, and the wider impact on friends, families and carers not to mention the draw on healthcare resources, the reach is significant.
High profile personalities who have had the condition include the actor Ashton Kutcher. Ashton Kutcher was temporarily blinded and lost the ability to walk but survived, describing himself as “lucky to be alive.” It took the life of Harold Ramis of “Groundhog Day” and “Ghostbusters” fame.
An autoimmune disease results when the body’s natural defence system fails to differentiate between its own cells and foreign ones and as a result mistakenly attacks normal cells as happens for example with rheumatoid arthritis. There are about 80 types of autoimmune disease.
My wife Amanda (pictured following a recent consultation at the incredible Anne Rowling Regenerative Neurology Clinic), who has supported me completely on my journey, also suffered an autoimmune condition called sarcoidosis. Having a degree in biological health sciences she understands the importance of nutrition in maintaining health when dealing with vasculitis. Inflammation lies at the root of so many illnesses and anti-inflammatory foods can play a significant role in alleviating symptoms. Her study of the relationship between nutrition and stress management is of particular interest to both of us, not least because of the prevalence of stress related conditions within the legal profession. We work as a team alongside other handpicked employment lawyers who provide us with support.
In late 2010 my health went downhill dramatically and when I started to experience severe pain, loss of mobility and rapid weight loss. The cause was a complete mystery. After months of uncertainty I received my diagnosis in January 2011. My condition is known as vasculitis manifesting as mononeuritis multiplex. Like many people I had never heard of vasculitis. It is also known as microscopic polyangiitis (MPA). It is extremely rare, occurring in around 15 people in a million in the population although in my case an extra feature (it is ANCA negative) makes it even rarer. It appears that it may have been in my system for a number of additional years.
Vasculitis can strike at any age, broadly affecting men and women equally.
Those affected generally also suffer from non physical challenges such as anxiety, loss of self esteem and depression. Many lose their jobs or experience difficulties in holding down a job. Some experience relationship breakups. In the cases that I have dealt with I have found that for sufferers holding on to a job is about more than the need for income. For many, retaining a sense of purpose is critical in dealing with their changed situations.
Although most people affected are protected under the Equality Act in the UK and similar legislation elsewhere, employers find the condition difficult to deal with and understand because with some exceptions sufferers show no outward signs of being unwell.
The cause of vasculitis is unknown. Generally it is incurable and if left untreated can be fatal.
So diagnosis at the earliest possible opportunity is critical. Because it manifests in so many different ways, even to the point of mimicking other diseases, and every person reacts differently it demands the highest standards of knowledge and treatment from medical professionals.
During my time in hospital I heard about Lauren Currie, also from Scotland, who had died from vasculitis on 23 October 2010, aged 15, just before I was admitted to hospital. Amanda and I got to know her parents, Grant and Adrienne Currie, who dealt with the unimaginable tragedy of their only daughter’s death by setting up a foundation in her name. Driven by the thought that an earlier diagnosis might have saved Lauren’s life (she died within days of her condition having been identified having been ill for some time), they have made an enormous contribution to furthering knowledge of the disease and in the process have made a great difference to many lives including mine.
Funds raised by the charity are used to help with research into the disease and its causes as well as to provide a range of support services to members of the LCTF community. Amanda and I have found the support received from them to be invaluable. Hence It gives us enormous satisfaction to work on a pro bono basis with them to help sufferers with work related problems, as many of them cannot afford legal advice in the wake of the consequences of the disease. My experience has given me a particular interest in the employment law aspects of vasculitis. I have always believed that one’s livelihood is one of the most important things in life and depriving somebody of that is a step that should not be taken lightly, hence my career choice to become an employment lawyer so many years ago. In all my experience I have seldom come across such difficult and harrowing cases to deal with as those involving vasculitis.
In many ways the challenges caused by the illness are no different from those suffered as a result of other chronic health conditions. However, the fact that generally it does not give rise to outward signs of disability can lead to employers believing that an employee may be shirking or putting it on. Naming the condition does not necessarily help as the chances are that the employer has never heard of it.
I have always believed that applying an approach based on education and training is preferable to confrontation when faced with a problem in the workplace and most employers when they have an understanding of the condition are prepared to make reasonable adjustments as required under the Equality Act. However, it is not uncommon to find that sufferers find themselves included in pools for selection for redundancy or approached to enter protected conversations with a view to having terms for departure agreed simply because the employer is unsure as to how to deal with them.
It is often ignorance rather than badness that gives rise to unnecessary dismissals.
My last visit to hospital confirmed what I had suspected for some time which is that my condition has flared again over a lengthy period including during lockdown when it could not be treated. Flare ups can happen at any time and have to be carefully managed. First class medical treatment from the NHS at all levels (consultant, gp, nursing and admin staff) and support from the community created by the Lauren Currie Twilight Foundation give me every confidence of a return to remission again. As with any major illness it is critical to keep on moving forward and never to lose hope.
Significant progress is now being made in advancing knowledge of many medical conditions and LCTF plays a significant role in that concerning vasculitis. If you are interested in finding out about vasculitis and the valuable work that Grant and Adrienne have done in memory of Lauren then you may wish to click on this link The Lauren Currie Twilight Foundation. You may even wish to make a donation to support their cause in which case it will be very gratefully received by the Foundation and put to good use.
We all have to be mindful that the NHS is under intolerable pressure at the moment and health focused charities are having to compete for attention. Hopefully the role that LCTF plays in broadening awareness of vasculitis continues to result in more cases being diagnosed early with the result that less NHS resource has to be deployed in treating advanced cases. This has already happened.
I have no idea what the future holds but then who does? Unexpected events can knock you sideways and one just has to deal with them as best one can. But it is one's reaction to those events that matters as much as the the events themselves. I find that picking out the positives, taking one day at a time and using one’s experience to help others can make a difference, the latter being particularly important. I have been knocked down twice so far by this illness and it may not be the last time but I plan to keep on going and do what I can to get up back up again and again.
Empathy with clients is a powerful asset for a lawyer advising in this most human area of the law. Having the same condition as the client makes for a more meaningful relationship.
A positive aspect is that an illness like this reminds me of three of the most important things in life - health (mine is compromised but I still have enough left to function), who you spend your time with (colleagues, friends, family and now for me including LCTF) and having something to look forward to. The third one of those defeated me for a long time because with illnesses such as vasculitis it can be easy not to see a future and I am no more immune than the next person to the mental and physical consequences of it. I managed to avoid use of anti-depressants because they can fog the brain but the acid test for me was starting to re-connect with client work when I felt able to do so. I did not for the first few years when I did not know how the disease would pan out. As self-medication, the process of working with clients again worked like a dream. Although there is no denying that it has been a lengthy and difficult roller coaster, the experience has renewed and strengthened the sense of purpose that originally attracted me to employment law. It’s just about helping people less fortunate than ourselves on the one hand and about applying an education based and best practice based approach for employers on the other. My next course of treatment should start shortly and fingers crossed it should yield some improvement again. If the doctors can squeeze a few more years out of life for me then I will be further blessed. I now feel as excited as I did exactly 35 years ago when I struck out on my own and opened the doors for my first specialist employment law firm (Mackay WS later Mackay Simon WS), with no plan and no idea what the future held but a clear vision as to the kind of lawyer I wanted to be, what kind of lawyers I wanted to work with and a clear sense of purpose and values. If vasculitis has taken me back to those key basic principles that work for me and if it enables me to help others in a similar way then that is fine by me.
Employment law is a wonderfully rewarding career choice and I would encourage any lawyer facing a career choice to consider it.
“The obstacle is the way.” Marcus Aurelius
