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Posts Tagged ‘neurological’

20 years ago I was undergoing a battery of tests to try to establish which neurological disease I had. I’d fallen ill 3 years earlier, aged just 22, and was initially misdiagnosed with ME. My symptoms changed over the next few years, and looked increasingly like MS. A MRI brain scan showed multiple lesions, suggesting some form of inflammatory disease process. More tests were needed to find out what.

I had those tests on November 5th 1997, 20 years ago this weekend coming up. Scans of organs of the body, visual evoked potential test, a lumbar puncture, and many blood tests. I remember driving home to the sound and smell of fireworks. The new diagnosis came a few weeks later: cerebral vasculitis, inflammation of blood vessels of the brain, cutting off the oxygen, causing brain damage, and symptoms similar to MS.

For a long time the future looked bleak, especially after a relapse in 2004. Vasculitis is an incurable disease, but with luck – and appropriate treatment – it can go into remission. Treatment is often lifelong steroids and immunosuppression, to reduce the inflammation in the blood vessels. I’ve had a very tough time over the years, though have been more stable since I demanded high dose chemotherapy infusions in hospital throughout summer 2012. Those turned things around.

So I’m now managing on a lower cocktail of daily immunosuppression drugs. But I’m still getting worse. I recently renewed my Blue Badge and my mobility was significantly worse than when I’d last renewed 3 years ago. And I’m very disabled in other ways, including sleeping up to 18 hours a day due to the brain inflammation. I can’t work with this, and am very lucky to be alive.

But I’m happy! And still here. So thankful for that. But it’s frustrating having this condition, that I will never be rid of. It’s also difficult for people to understand what’s wrong. Even though I use mobility aids – usually 2 sticks, if not my wheelchair – most of my problems are inside, invisible.

For more on my vasculitis story see my page on the Vasculitis UK charity website.

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I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.

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Today is Rare Disease Day, where people living with rare diseases are promoting their experiences through social media and other forms of networking. Though this is a bit of a break from my usual academic blogging, I hope that readers will understand why I’m writing this.

I live with a 1 in a million diagnosis, falling ill when I was just 22. The name is cerebral or central nervous system vasculitis, which when it springs from nowhere – as in my case – rather than as a result of another disease has an incidence of about 1 case per million people per year. Yes I’m special! Mmmm. This disease has impacted on my abilities to be an academic, forcing me to leave one full-time science PhD and later study part-time as a historian, to PhD level (completed – yay!). And it means I can’t work in academia in a paid capacity, due to my MS-like symptoms and living with what is a progressive disease. But I try to be as productive as I can. To read more about my medical story see here, and to read more about how I’ve coped as an academic see here.

But in this post I wanted to reflect more on some issues that living with a rare disease causes, rather than something more commonly found like cancer or arthritis. These range from diagnosis, through ongoing treatment and medical research, support from the social care system, and varied degrees of understanding from family, friends and colleagues.

Firstly if you have a rare disease, getting the correct diagnosis – which can be life-saving – can be very difficult. General practitioners tend to assume a more common disease form is taking place. Even at hospital level this idea can persist. I was initially misdiagnosed with ME, which at the time (and to be honest still is the case) had no viable treatment. But my symptoms changed over the following years, looking more and more like multiple sclerosis. And progressing. It was very hard to get the GPs to take me seriously. It was only after 12 hours of unstoppable vomiting for no reason – one of my early symptoms – and a GP having to give me a midnight injection in the derriere that he referred me to hospital, extremely concerned. Even at hospital the consultant assumed my ME diagnosis was right. I had to argue with them – hard given how ill I was – why I thought it was wrong, and why more tests were needed. I was right. I had a very aggressive life-threatening disease. One shocked consultant, me just relieved that a proper diagnosis had been made, and treatment could finally start.

But then there are problems too. if you have a very rare disease it’s unlikely to get much medical research, so new treatments may not be discovered, or may not be assessed to be cost worthy and suitable for your disease. With more common forms of vasculitis – the disease I have – there is more medical research happening, particularly into those forms of the disease that are ANCA-associated. For these forms of vasculitis new treatments are developed, and approved on the NHS. But for much rarer forms like my primary cerebral vasculitis the number of patient cases around the world – and in any country – is so small that it isn’t possible to do traditional medical research trials. So my form remains largely unresearched, and there aren’t the trials and resulting scientific evidence to lead to approval for treatment with new drugs discovered for other forms of vasculitis. For example Rituximab is an extremely expensive life-saving treatment approved for ANCA forms of vasculitis. There is not scientific evidence for Rituximab in the rarer non-ANCA forms like mine, and as a result it is rarely approved by health authorities in the UK.

With such a rare diagnosis support at general practitioner level and nurse level can be a problem. They’ve probably rarely encountered any vasculitis cases, which is rare enough, let alone my specific form. I have an excellent GP who has treated me since 2004 (I fell ill in 1994), but it can be difficult to get appointments with him. Because of him being away from the surgery on one day combined with the health centre appointment system stopping named appointments on certain days it would be vastly easier for me to get an appointment with any doctor, particularly a locum, but unless they’re “my” doctor they wouldn’t know what to do with my case. I’m on an incredible cocktail of drugs as well as having something rare and exotic wrong with me, and continuity of care is important. Even with nurses who administer my monthly (and for many years weekly) blood tests things have been a little difficult, with nurses not understanding why certain tests are needed, and not initially taking my word for it. But we got there in the end. Incredibly even at hospital level there are problems if you have to see another consultant unfamiliar with a rare disease and case. My consultant since 1996 recently retired, and I was very concerned that I would be put in a general clinic where I would have to tell my medical story every time, and even after that the medic on the day wouldn’t be confident what to do. Fortunately I was passed to another consultant who was my “backup” for years. He’s young, and hopefully not retiring or moving anytime soon!

It might be expected that a medical professional should know about a rare disease, though they rarely do. But it can be harder for non-medics. This causes problems for example for people applying for benefits through the benefits system. But even with family, friends and colleagues there can be misunderstandings. My disease is largely invisible. I only use a wheelchair rarely, though I have at least one stick (and sometimes two) permanently. People often only see me for the short periods I can go outside to an event, and don’t realise how much it takes out of me, and how much I need to rest before and after events. Also because I manage to do things people can underestimate how badly I am affected. I’m particularly minded of the notorious experience of dealing with a neurologist, who because I had completed a PhD couldn’t grasp that I could have cognitive problems. I completed that PhD towards the end in 1 hour chunks, spread throughout the week, up to 5 hours total time a week if I could manage it. After each hour I would be very wobbly, couldn’t control my limbs, just from the brain concentration I’d been doing, and it might be a couple of days before I could do anything PhD-y again. Yet he thought I was fine, on the basis of a short consultation, and because I had that PhD.

Fortunately both my history PhD supervisors were hugely supportive. They quickly grasped that they didn’t need to understand the medical side of things, they just had to know how I was affected, and let me take control of my studies. I’ve also had wonderful support from the department since completing the PhD, giving me an ongoing honorary research fellowship. And conference organisers are typically very helpful if I have to use my wheelchair, letting my husband accompany me at no registration cost, to assist me.

I don’t know the numbers, but there are probably a lot more people living with rare diseases out there than people think. I’d like to think that the situation will improve for them. But it’s going to take a bit of a sea-change in attitudes, both among the general public, and among the medical profession.

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As the month nearly comes to a close I’m winding up my AcWriMo activities. And as always around this time I thought I’d look back on how things went.

At the start of the month I had three goals outlined, all involving academic journal papers in various stages of development.

Two of these goals were fully or better accomplished. One was revising an accepted paper, which I turned around in the first week and emailed to the relevant editor. Another was starting to convert a conference paper from spoken talk with PowerPoint slides to a written version suitable for an academic journal paper. I set out only intending to start this process, the first draft of converting the spoken text to words, with much further development and enhancement required later. But as things turned out I went far beyond this, developing many sections of the paper more fully, and having it much closer to possible submission to a suitable academic journal.

The remaining goal was to finish developing an already mostly written academic paper, ready to send to a colleague to read through and give suggestions before I develop it further prior to submitting to a journal editor. This was the only goal not fully completed, although I managed to overcome a major impasse, working out a new strategy for approaching one of the main case studies in the paper, which I then largely wrote up. There are many sections still to be finished off and polished, and it’s not ready for that read through yet. But it is well advanced, and I should be able to get it ready to email off by Christmas, with hopefully the aim of submitting it to an academic journal paper sometime early in 2015.

All this was achieved against the backlog of struggling for much of the month with my neurological illness, more so than usual. There were several weeks when I could barely manage an hour of writing total. And then there were better weeks when I might manage 2-3 hours total if lucky, again done in 1 hour bursts.

The main strategy I found for keeping going when well enough was to think in terms of which goals I would target in specific weeks. So I had in mind key activities for the first week, and the second week, and so on. This broke down what might still have been quite a daunting task – three quite ambitious goals for the whole month for someone so very ill with so limited time – into more manageable chunks. And if I put in the time, even in isolated one hour chunks here and there, I could make slow but steady progress. Breaking it down into week by week goals also helped to keep the momentum going, and that I had to get on with things, lest time slip by and be lost. But I did have to rest when too ill.

Academic writing month can be a wonderful focused time, but for me the best thing about it is the good habits it can help to develop, which can be applied throughout the year. So the importance of making achievable goals and to-do lists, breaking down larger tasks into manageable chunks, and keeping going, even in small bursts, to make progress in spite of time and other limitations.

So I’m very glad I took part again. I look forward to taking part in 2015!

 

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Just before the old year ends and a new one begins I thought I’d do a recap on how things have gone for me in the last year, particularly academically.

My honorary research fellowship was renewed again. This is from History in the School of Humanities at the University of Dundee. After I finished my PhD in 2010 I asked if I could get an honorary fellowship, to help me continue to access vital resources like electronic journals, which are typically only available to current staff and students of universities subscribing to them. This is particularly important as more and more university libraries switch from subscribing to print copies to e-journals, which, generally, are restricted in who can use them. I’m a life member of one local university library, and have another one nearby, but neither opens up their e-journals to people who aren’t staff or students. So this was important to allow me to keep up to speed with current research and new developments. And the fellowship has been renewed every year since. It’s also nice that when I give a conference paper or publish a new academic journal paper it provides some kudos to the department which has supported me so well.

Over the year I’ve submitted more journal papers. I learned early in January that another paper had been accepted. It’s derived from part of my PhD thesis, with new additional material, and will be published in Library & Information History in 2014. Another prize-winning paper is due to be published at some point in the Journal of the Edinburgh Bibliographical Society. And I was asked to do my first academic book review, for the Journal of Scottish Historical Studies, and it was published in November 2013. Other papers are with editors, or at various stages of development. And I was pleased to see two of my past academic papers became freely available online, under open access rules.

I took part in four academic conferences this year. The first was a conference for archivists, where I gave a talk about my experiences as a disabled user of archives. This was held locally, in a hotel in Dundee, so was easy for me to get to, but I was very weak from the neurological disease that day, and it was something of a struggle. But I wanted to present this important view, and was glad to make it. I blogged about both my time there, and the topic I was talking about.

In the summer I attended one day of a conference about the Middle Ages in the Modern World. This was at St Andrews, my former university, actually very near to where I was once a science undergraduate and postgraduate student. This was much fun. Again my husband was with me on the day, to help me manage everything in my wheelchair, and I blogged about my time there.

The third conference was that of the Economic and Social History Society of Scotland. Their autumn conference, in September, was held in Inverness, and focused on the topic of Rural Scotland. I gave a talk about my postgraduate Masters dissertation research examining Melrose regality court records (local court records for Melrose and the surrounding area) in the late 17th century. I am currently looking to publish this as an academic paper, and got very good feedback and had a very rewarding time there.

The fourth conference was held in late October to celebrate the work of my PhD supervisor who died a month earlier. It had been planned long before he died, and was a conference of mixed emotions, but ultimately positive.

I also had another flying visit to the Edinburgh International Book Festival in August. Not academic at all, but a wonderful celebration of books and reading, and I was very glad to be able to go again.

In November I took part in Academic Writing Month again. My goals were more modest this time: resubmit a revised journal paper (done), and submit a paper to the SHARP (Society for the History of Authorship, Reading and Publishing) 2014 conference in Antwerp (also done). Whether my paper for SHARP is accepted or not I will be there. I’m also planning on going in 2014 to a book history conference at St Andrews in the summer, and will be flying down to London to attend the Worldcon World sci-fi/fantasy/etc. convention at the Docklands.

Another major interest of mine is genealogy. I run a Cavers one-name study, researching all families with this surname, particularly before 1900. Developments on this in 2013 included me starting a new Y-DNA study to use DNA to look for connections between different Cavers lines. I also gave a talk about my Cavers one-name study at a Guild of One-Name Studies regional meeting at Perth. A version of this is online, with PowerPoint slides and my audio delivery.

I also run two one-place studies, where I research two parishes in the past. Both of these have a particular focus, for practical reasons, before 1820. The two parishes are Coldingham in Berwickshire, and Melrose in Roxburghshire, both Scottish Borders parishes with family connections for me. I continue to transcribe and develop online resources for these studies, and in 2013 this included adding a person index of about 9000 names for Melrose court participants between 1657 and 1676. Likewise for Coldingham I put online a list of 19th century prisoners from the parish.

I’m a roleplayer, and play Call of Cthulhu online at Play@YSDC. This works well for my neurological disease, meaning I can play as and when I’m able to. It also means I get to play with people around the world. In 2013 I started a new game in our ongoing campaign of Doctor Who / Call of Cthulhu crossover games. And I also started a game set on the Bass Rock, hopefully the first of many games (if our characters survive!) set in Scotland. Sadly I also dropped out of a game for the very first time – it was proving too unreliable in terms of keeping going, with long periods of inactivity by the keeper which I couldn’t keep up with – but I hope that won’t happen again for a long time.

Continuing the roleplaying theme I’ve been writing more of a series of crossover history/roleplaying articles, which I plan to compile into a book, probably in digital format. This is slow-going, but I hope to make more progress in 2014. Likewise I have been continuing to develop my very long-standing interactive fiction (text adventure) work in progress – a whodunnit set in Hermitage Castle in the Scottish Borders, about 500 years ago. Again another thing to work on in 2014.

My neurological disease continues to be a problem, but is being a bit better behaved at the moment, and may have gone into remission or need less daily chemotherapy and steroids to control it. I’m still left with the legacy of brain damage from the past, and wide-ranging disability that this causes. But I hope for a bit of a break from too toxic a cocktail of daily drugs. And maybe I will be able to get more done in 2014 than I have for a number of years. It may be just a temporary respite, but I want to make the most of it.

Anyway I’m looking forward to 2014 in an optimistic manner. Hopefully it will be as productive and rewarding as 2013 was.

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One thing I learned in my PhD is that it’s important to push yourself to try difficult things. It’s possible to get through an undergraduate degree by always playing it safe. Even a postgraduate Masters can be mostly completed in your comfort zone. But when you get to PhD level, it’s only by trying difficult things, and tackling them head on, that you get the best results.

I’ve been trying to apply that since completing my PhD in 2010. For example today I submitted a proposal for a colloquium on library history research to be held in London in early 2015. It would be much easier for me not to go. I have a severely disabling neurological disease, and travelling all the way there, even giving a talk locally, would be very difficult. But I know that I can contribute a lot to the meeting, and so I sent in a proposal. And if I managed to attend the meeting and present my paper I’d get a huge sense of personal achievement.

Likewise the other day I put in a proposal for a conference to be held at Inverness in a few months time. Ok Inverness is not as far away from me as London, but it would still be quite a trauchle (good Scots word – think ‘struggle’) for me to get there. But again I think I can contribute a lot to the conference, it would be nice to get the research from my Masters dissertation ‘out there’, and it may help to see it eventually in print form in an academic journal.

This is also why I’ve been pushing to get my research published in journal articles. Again this is a difficult thing for me to tackle. My progressive neurological disease causes significant cognitive problems, such as considerable difficulty reading, concentrating, general confusion and dementia-like memory problems. So preparing journal papers, and dealing with revise and resubmit for example isn’t easy. But I do it because it’s challenging and rewarding, and seeing my research in print is ever so satisfying. I currently have two papers accepted by journals and awaiting publication, another one being considered by an editor, and another one where I was offered revise and resubmit, and will be doing that. For the same reason I aim at ambitious journals. I have time, hopefully, and would rather wait and work to see my paper published somewhere really good, than go for an easier, safer, less satisfying result.

Of course doing all this requires confidence. But generally that’s something that grows during the PhD process, and culminates in the successful passing of a viva. And then as you get first one paper accepted and published, and then another (I’ve had five single author history journal papers accepted so far) the confidence grows even further. So it’s an ongoing process.

So try the hard things folks. Don’t play it safe. And see where it takes you. Even if, like me, you are outside conventional academia, and ploughing your own path.

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