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Posts Tagged ‘disability’

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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Followers of this blog may know that I completed a history PhD. But perhaps many won’t know that I did this while battling a severely disabling neurological illness. And even less known is how badly this affects my reading. Ironic since I was researching historic reading habits for my PhD.

Reading has been a problem for me since the late 1990s. I struggle with ordinary print, finding it swims constantly, and I can’t read it for long at all. Even managing to read a single page can be too much. So there’s no way I can read for a long time, or any extended book like a novel. The only print I can read now is either diving in to specific sections (very short sections!) of an academic book, or reading graphic novels (comics),

When I was retraining as a historian my postgraduate Masters degree had hefty reading lists for each week’s lecture and round-table discussion. Obviously I couldn’t read all those. So I’d try to see which books were most relevant, and narrow down what was needed. Really brutally, to specific sections, or abstracting drastically. Most of the reading list wasn’t discussed each week anyway, so I coped. And my lecturers, including my PhD supervisors, little knew how badly my reading was affected. Even now I battle to read academic books, and rarely can. Academic journal papers also pose a significant challenge. Note many of these humanities academic books are not available in e-format, especially older ones.

But though I could work around things to a large extent in my academic life I couldn’t avoid the problems the reading difficulties caused for my recreational reading. For much of the late 1990s and 2000s I stopped reading for fun completely. It was devastating, for an eager reader like me. I tried audiobooks, for a while having a very bulky tape player on loan from a national listening library, and receiving bulky tapes in the post. But this didn’t work well, because of my memory problems, which meant that I constantly need to go back to reread sections, to remember plot and/or characters. Easy in print, or ebook; much more impractical in an audiobook, especially a manual tape player.

What turned things around for me was ebooks, firstly on my iPod touch, and then in Kindle format. I adjust the font and spacing to be huge – more like a Ladybird book size, for little children. And then I find I can read, and read, and read. Still in fairly short bursts, and I still contend with major memory problems affecting my reading. But I was reading again, for fun. Woot!

That was several years ago, and my reading enjoyment continues. As an ebook reader for a long time my local library didn’t provide any ebooks, and I couldn’t read their print format books, even large print. More recently they added ebooks, but an extremely limited selection, with little that I wanted to read. Vastly less than the range of books provided in print format to the library’s users.

So I usually have to buy ebooks. Often I’ll pick up bargains, e.g. in Amazon’s special Kindle sales for 99p. Or relatives will buy me ebooks for my birthday or Christmas. Often I pay full price for an ebook, for something I really want. But it is quite an expensive habit, since I can’t borrow free books from the library.

On the plus side many out of copyright ebooks are freely available through Project Gutenberg, and can be downloaded to load onto e-reading devices like Kindles, iPads etc. I’m currently working my way through Charles Dickens, and have also read and reread all the Sherlock Holmes books. But I’m more likely to read new books, even if I must be careful how I buy them.

But I am reading! So it is more than worth it. Each year I set myself a reading challenge in Goodreads, where I record the books I’m reading. Given there can be extended periods (weeks or even months) where I’m too ill to read at all I’m modest in my challenges. But this year, based on past successes, I set myself the goal of finishing 50 books in 2017. So far the running total is 67. For example this October has been full of spooky reads. I’ve just started Ray Bradbury’s The Halloween Tree, which I’ve never read.

I know many people are anti ebooks. That’s their choice. But my story isn’t unique. I’ve heard of other people with similar medical conditions – e.g. multiple sclerosis, ME or stroke survivors – who also struggle with print, but with ebooks can adjust the font and spacing so they can read. I think this aspect of ebooks and reading is little understood and little recognised, but for me it’s been life-changing, and remarkably positive.

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Before I retrained as a historian I was a computer science undergraduate and postgraduate student at St Andrews. I only left that after developing a MS-like illness, aged just 22. I couldn’t carry on with the full-time PhD. I doubt with the brain damage I could even have completed it part-time.

It was very difficult, leaving that PhD. It took me years to come to terms with it. But I’ve kept in touch with people, and have good friends there. My husband completed his PhD there, a few years after I left, so we have retained strong ties with St Andrews Computer Science, even if it’s been difficult for me.

I was approached a few days ago by one of my St Andrews PhD supervisory team to write a profile for the CS alumni page. I’m guessing a call went out to the staff to try to get more profiles from past students. I didn’t expect to be asked, given the circumstances in which I left. But I think it was a positive thing.

Writing the profile brought back lovely memories, especially of my undergraduate days. It’s now been posted on the website. Click the “read more” link to see more of it, including my favourite undergraduate modules, and other memories.

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Inspired by a very thorough piece in the Guardian newspaper today by Kate Sang I wanted to reflect a bit on my own problems attending academic conferences.

Decades ago I was a young and healthy academic, about to start a computer science PhD. I could attend conferences in their full form: going to all sessions, all days, including meals and socialising.

Shortly after that I fell ill, at just age 22, with a neurological illness very similar to multiple sclerosis. It took some years for me to be diagnosed with cerebral vasculitis, but by then I’d had to drop out of that science PhD. Fortunately I retrained part-time as a historian, picking up three more degrees, including PhD. My disease is incurable, progressive in my case, and is treated lifelong with chemotherapy drugs and steroids to reduce brain inflammation and slow damage.

I can’t work in a paid form due to my illness. It is severely disabling. I sleep for much of the time, sometimes up to 18 hours a day, every day, due to the brain damage and inflammation. And even when awake I am often very confused and can only work for short periods. Near the end of my history PhD I could only work for five hours total a week, in one hour chunks maximum, spread over many days. But I finished the PhD. And I am now active as an academic. I publish academic journal papers, undertake new research projects, and speak at conferences and attend as an audience member. I have an honorary research fellowship from my university, though costs of attending events etc. are paid by myself.

Whereas 25 years ago I could attend a conference in its entirety, now I have to pick at most one or two days, with a day of rest in between. I will also usually have to be modest in my expectations re the number of panels to attend.

Firstly there are the practical issues of getting to the conference. I’m typically travelling with a wheelchair, which usually makes connections by train etc. difficult. Normally if I am flying to a venue it is far easier to get a taxi – albeit costly – from the airport to the hotel. But this only works if it’s within reasonable and affordable travelling distance. A few years ago I was invited to speak at a book history conference in Germany, which would have been very good for my research interests and academic networking. But the venue was far away from the airport I’d be using, and a taxi trip would be quite impractical in journey time and cost terms. Nor could I rely on being able to access trains. So reluctantly I declined the invitation. Fortunately I was asked years later if I would like to contribute a piece to the conference’s collection of essays. I submitted my piece, and the book is due to be published in a month.

Even on the spot physical accessibility is a major concern. I normally now use two sticks, but when at a lengthy academic event I need to use my manual wheelchair – with husband along to help push – to manage to last the day. And getting into and around academic venues can be highly problematic.

One thing I should praise is I’ve found conference organisers usually very helpful in helping my husband attend as my carer. He shouldn’t have to pay, since he is just there to push me around and help me navigate obstacles like doors etc. He is also an academic, but in a very different field from me. So he’s not there to listen to the talks. Most conferences allow him to attend for free. That is enormously helpful, and not something I expected. We still have double travelling costs, but not paying double conference fees does ease the cost for us to a certain extent.

Though against that positive experience very few academic conferences offer daily registration fees. At least in my field – humanities – you typically have to pay for the full conference or nothing. And with me often only attending half or even a third of the conference this makes them particularly costly for the time and benefit that I’m going to get in return from the event. Sometimes I do get a reduced attendance fee though. I am particularly grateful to a recent conference organiser, who given how little I was going to be there, let me attend for free. And my husband as well of course. Thank you Drew!

Once there, if a venue has stairs to reach talks I cannot possibly attend. Sometimes organisers move rooms, which I am very grateful for when it happens. But it’s not just about the room where the talks take place, but also about getting into a toilet, and getting to meals. I have severe bladder incontinence from my brain damage, which in particular causes huge problems with urgency and frequency. I need to go to the toilet a *lot*. Having a wheelchair toilet beside the room is good, but if I have to go constantly during the talks – as has happened – it can be very awkward.

One conference that I regularly attend relocated to a ground floor room, with a toilet beside it, which is good. But the meals including lunch were elsewhere in the building, and I would not be able to get there, without major difficulty. It was far easier for me to stay trapped in the room during the lengthy lunch break, while my husband fetched food for me. This cut down the vital networking with fellow academics I could do, though thankfully some historian contacts specifically sought me out at these times, and had lengthy chats with me in the room on my own. Likewise the book stands of academic books to buy at this conference were upstairs. No way could I get there. So again husband was dispatched, with iPad, to take photos for me to browse, and also to bring any specific titles of interest down to me to look at. In this instance the Brill publishing rep actually came downstairs to take the order from me directly. He was keen to help, but it was still frustrating for me not to be able to browse through all the books in person.

Sometimes I attend conferences with multiple streams of talks on at once, in many rooms, even a dozen and more in one case. For these conferences I will always try to let the organisers know in advance which specific panels I want to attend, to make sure I can reach them ok on the day, and rooms can be swapped in advance if need be. But that only works if the messages are passed on correctly at the other end. At the SHARP 2016 book history conference in Paris, at the Bibliotheque Nationale, I’d checked all the talks in advance, and was assured by the organisers that I would be able to reach them. When I got there on the day I found a panel I very much wanted to go to was up many stairs, in a building without a lift …

But perhaps the worst aspect for conferences for me as a disabled academic is how intensive they are, and how crammed the days are. Often they start at 9am or even 8am, and continue until 6pm or 7pm, with a packed set of talks running throughout those periods. Very tiring in brain concentration terms, and much stamina needed to get through. I understand organisers are trying to fit as much in as possible for attendees. But it is exhausting, even for fit and healthy academics, who can find it wearing. For me it’s impossible to attend even a full day of this. So sometimes I’ll have to choose morning or afternoon, or if I am lucky afternoon and evening. Or I need to try to factor in some sort of rest time, which is difficult in a venue that I don’t know well, crammed with conference goers. I remember at an Ada Lovelace event in Oxford a few years ago that I went back into the main lecture theatre – then deserted – during lunch, to have a bit of a rest, and quiet time to myself, while everyone else socialised out in the lunch area. That quiet time refreshed me enough mentally to allow me to stay for some more talks in the afternoon.

I know that it’s unusual for someone to be as bad as me health-wise and still want to attend academic conferences. But the problems that I have described aren’t unique to me, and some of them – especially issues of fatigue and mobility issues – will be shared by other academics. Not all of these academics will be so obviously disabled. I remember that when one conference I mentioned above was moved to a ground floor venue this turned out to benefit quite a few other attendees, who would not have said anything before. So more accessible venues can benefit a wider academic population.

In practical terms I’m not sure how much longer I can keep attending academic conferences. And if I do it will have to always be done in a modest way, within my limitations. With travel costs, and logistical challenges, there is a trade off between costs and benefit. I will have to continue to decide if it is worth it for me. But for now it is. I just hope not to run into too many practical challenges in future conferences …

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I’ve been spending much time in the last week in the 17th century, transcribing a lengthy poem about a corrupt court judge at Melrose in the 1680s. Doing that reminded me of the talk I gave in September 2013, at the conference of the Economic and Social History Society of Scotland, held in Inverness. I thought it would be nice if I put the PowerPoint slides from that online, so have done that – link here. It was a 20-minute talk, as is usual for academic conferences, so I was limited in how much I could say. But I covered a lot in the time allowed.

My talk was titled “Glimpses into a time of turmoil: examining the regality court records of Melrose, Roxburghshire, 1657-1706”, and was based on the dissertation for my taught MPhil degree at Dundee. I studied the voluminous local court records for Melrose regality, and had a fantastic time. I have ancestral connections in Melrose, going back to this period, and lived there myself for part of my childhood. And as a disabled student it was a perfect project: the records are largely transcribed already, so I could work on them at home, as able to.

In the process of the research I built up a gigantic database of court cases, pursuers and defenders. The index of people’s names recorded is online already, as part of my Melrose one-place study. There were probably only about 2500 people living within the court’s jurisdiction at this time, making the vast numbers of people recorded as using the court quite astonishing.

The slides don’t record everything I said in the Inverness talk though. For example there’s a detailed slide of the many debts murder accused John Halliwall weaver in Gattonside left in 1673 after escaping prison before his trial. I explained more about Halliwall’s story verbally on the day, not on the slides. He escaped on horseback, after a court officer let him out of jail to help him sell ale!

I’ve also spoken about the 17th century court records to the local historical society in Melrose, many years ago, in a well attended talk in the town.

There are so many other stories I want to share about the Melrose community from these records. For example a g… uncle of mine was judge of the court from 1657 to 1665. Well he was, until he was charged with “striking and hurteing of Robert Mott, servitor to John Bowar, portioner of Eildoune”. His own court fined him £10, and he lost his job. But that, and more, is for another day!

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Two weeks ago I was in Paris, partly for holiday, partly to attend the annual SHARP book history conference. SHARP is the Society for the History of Authorship, Reading and Publishing. Its conferences are held each year, usually alternating between North America and Europe. I’ve been to SHARP conferences four times now, since 2005, and always find it a rewarding experience. I’ve written up my 2016 experiences below, mainly to have a record for myself for the future. In a nutshell I had a great time, and was inspired as usual, but had some wheelchair accessibility issues, and other concerns about the conference venue. If you want to read on feel free, but note it is long!

This year’s conference, per the usual format, was held over three main days, with over 100 panels of usually three talks, up to eleven panels simultaneously at any given time. In addition there was a day of postgraduate talks and activities. The conference was held at the Bibliotheque nationale de France and the university site BULAC. This conference would turn out to have the biggest attendance yet of any SHARP conference so far. In addition the conference was bilingual, including live translation in place for the audience at key talks.

I could only go to the conference on one day. I have a neurological illness, similar in day to day symptoms to multiple sclerosis, and am limited in how long I can attend any academic event. I am also very weak after any event, and need to rest, preventing any chance of attending on successive days. I usually bring my wheelchair if possible, to help me last longer. Sadly wheelchair accessibility at sites varies, but usually we manage pretty well. As usual, I contacted the conference organisers before registering. This was partly to check wheelchair accessibility, but also to ask if my husband could be admitted free as my helper. I can’t wheel myself around, and having him there to help me through doors etc. and manage meals etc. is enormously helpful. Usually conference organisers are happy to do this, and that would be the case this time too. We intended to attend the Paris conference on the Wednesday, including the digital showcase, but had to wait for the final programme, released just before the event, to be sure. A drawback for me was the conference being split across two sites, with a long walk/push between them – fine for fit and healthy people, not so great for me in a wheelchair. So we were keen to stick to the one venue. Fortunately I found enough talks I wanted to go to on one day at the main BnF site. Ideally we would have been there for the opening panel at 9am, indeed earlier to allow time to register. But with the logistics of getting a wheelchair across Paris by taxi we aimed instead to get there for 9.45, when we would meet a BnF staff member to guide us in with wheelchair, negotiating the lift etc.

The conference started on the Monday, with postgraduate sessions, before starting properly on the Tuesday. I followed the tweets from conference attendees over the opening days – many more tweets than I’d ever seen for any previous SHARP conference. From the tweets it was clear that many people were struggling with heat, in unusually warm weather for Paris (up to 36C). This made me extra relieved that I was only aiming to attend on the one day, in a modest way.

Wednesday arrived. It was another extremely hot day, but luckily we had a scary but trouble free taxi ride across the city to the BnF. We met BnF staff member Isabelle who took us into the building, including via the lift. I was quite surprised at how much security there was in the BnF building, but in the circumstances it’s sensible. We registered us both with no problems – because my husband was recorded as a full attendee (albeit paying no conference attendance fee) this meant he got an identity badge too, which was good to have. At registration we ran into a St Andrews book historian we know, which was nice, then wheeled through to the auditorium foyer where the publishers stands were, and also the venue for many coffee breaks. Here we had our first hiccup with the building: an awful lot of doors to go through, which had to be opened wide. Again I was grateful my husband was with me, not coping on my own, though other conference goers rushed forward to help too, which was extremely kind of them.

We found the Brill publishers stand and managed to buy the book I wanted – a recently published St Andrews book conference proceedings, bought at SHARP at quite a discount. It was nice to see another familiar face with the Brill rep there, who we’ve seen before multiple times at SHARP and St Andrews. Then time for a quick drink, before heading off for my first panel at 11am.

Here we ran into more problems. The BnF is a very long building, and it was a very long walk to the salle Jules Verne where our panel was. I couldn’t have walked that distance, even when I’m on my feet and coping well. So thank goodness for the wheelchair. Though it was not always easy to wheel on heavily carpeted floors. Of course heavily carpeted floors are good for sound proofing, in a library environment. There were lots of “Silence!” signs around as we travelled along, past many quiet reading rooms.

The Jules Verne room itself was problematic. I had to get out of my wheelchair to get through the door. Even more troublesome was noise coming in from people speaking outside in nearby corridors, seemingly on three sides of the room. This was very distracting for audience members, and very distracting for the speakers, who often tried to raise their voices to be heard over audible conversations we could hear and follow from outside. This was not a great setting for an academic talk. Also seating in the room was poor for the audience trying to see the slides at the front. Much of the audience couldn’t see the PowerPoint pictures being shown by the speakers, with fellow audience heads in the way. Again not a great arrangement of room for what was needed.

Having said that, the talks were fascinating. This panel was about 18th century libraries, so bang on topic for me who completed a PhD on Scottish reading habits in the late 18th and early 19th centuries. I particularly enjoyed Jason McElligott’s talk about book thefts in 18th century Dublin. Partly this was for a personal reason: I have Dublin ancestry, and my ancestors would have lived in the city then. I doubt they ever set foot in Marsh’s Library, though I wouldn’t put it past them handling stolen books! But I also enjoyed it because it gave a different perspective on reading and book collecting tastes at the time. I actually commented on this in the Q&A section after the talks, suggesting to Jason that he could use the detailed lists of books stolen to reassess Irish reading tastes at the time. It’s quite likely that it would give a different picture from conventionally studied records like library catalogues and bookseller adverts.

After this it was lunchtime. So first was a long wheel back to the grand auditorium foyer where lunch was served. Here was a particular delight: individual take away cardboard lunch boxes, with handles, full of sandwiches, salad or pasta, fruit and a drink. It was a great way of giving out the food tidily, but also meant attendees could carry their lunches easily to wherever they wanted to eat in the building.

The Digital Showcase of book history computing projects is usually held on the middle day of the conference, and I was keen to get it. One project on display I was interested in had no-one there to talk to about it, and the information board was all in French, which stumped us somewhat, though we tried our best to read it, my husband even resorting to a simultaneous translation app on his iPad, photographing sections of the information board, and then letting the app try to spot the words and instantly translate. Quite magic, but a bit limited. However I was relieved to get to talk to Jan from St Andrews – another familiar face – about Book History Online. I’d recently noticed some gaps in its coverage, and wanted to know more about how the resource – an online bibliography of book and library history – is compiled. I came away much wiser. I’m sure it will be a useful resource for me to use in future. Fortunately although it is subscription only I can access it through my honorary research fellowship at Dundee University.

After this we made our way to the next room. And here problems were manifold. The next panel we were going to, about shipboard publications, was in the room designed PLK1, in one of the outside towers, outside the main BnF building. Fortunately we had studied the maps to know how to get there. But even once there we couldn’t get in the door. And the building’s security guards didn’t have a clue what was going on, or why we were wanting to get in that door. Eventually they phoned someone inside the building to come and open it from inside, but it was chaotic. And once inside we had to get to the first floor, with no lift. And my wheelchair. I had told the conference organisers in advance which specific panels I wanted to go to, but I believe there was a breakdown of communication at their end, and they didn’t move this panel to a more accessible room. Fortunately I’m not wheelchair bound, though very weak at attending a long day of academic conference. Most helpfully my husband was willing to carry the wheelchair up and down stairs, while I struggled with my sticks. So I was able to get to the panel I dearly wanted to attend. But this should never have happened. Once inside the room we were joined shortly by two of the speakers, who weren’t sure if they were in the right place, and wondered if anyone else would find the room! Fortunately more people did, and there was a good audience by the time the panel started. Though there was no trustworthy looking wifi in this venue for audience members to use, including no access to the main BnF wifi network. I ended up connecting to something that looked somewhat dodgy, but would hopefully let me live tweet. That wasn’t a great situation to be in.

Thankfully the panel was really interesting, and worth the struggle up the stairs with a wheelchair! The three speakers all spoke about different aspects of shipboard writing. I was particularly agog at the story of the New Zealand troop ship magazines being saved thanks to a Dunedin librarian with much foresight requesting in the 1920s that the magazines be sent into the library, for posterity’s sake. I also found the stories of emigrant ship magazines moving, giving a sense of community to people setting out on new lives. For example it was touching that these magazines, compiled by the emigrants themselves, referred to the ships as ‘home’. All the talks were well presented, and on time, and followed up with a lovely Q&A, with good cross-panel discussion from the panellists, as well as participation from the audience.

I had originally intended to attend a third panel of the day, on archives and book history. But what with the extremely warm temperature combined with our struggle up and down two flights of stairs I decided to leave early. So we called a taxi, and were picked up at about 4pm outside the BnF.

All in all I had a rewarding day. I’m not totally sure about the suitability of the BnF as a conference venue. Not just for my problems with wheelchair accessibility, but also due to relatively poor signage, widely spread out lecture rooms, and quite a lot of noise coming through into at least one of them. That room also had problems for people trying to view PowerPoint slides on screen. And we had wifi problems in the other room too. But we were made very welcome, and the lunch was superb. And, as usual, I found attending even the one day of SHARP incredibly stimulating intellectually. Even from just the two panels attended I have lots of fresh ideas to apply to my own research and writings, and feel inspired.

I’m not sure when I will be back at SHARP’s annual conference again. Probably when it is back in Europe. Health permitting. But I look forward to it. Meanwhile I have great memories of my time in Paris, including a day at SHARP 2016.

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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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