I am very open about the fact that I have an autoimmune disease, Hashimoto’s, and I try to do my bit to help educate others about this disease, and other autoimmune diseases. I feel as an educated patient, who works in digital health, I am well placed to do so and to a degree feel like I have a duty to do so.
Sadly one of the common problems for Hashimoto’s patients is a sensitivity to gluten, and I am no exception. Prior to becoming ill I used to poo-poo people who said they were allergic to gluten, putting it down to a health fad. Then, a few years ago, I became very ill, despite taking medication for my diagnosed hypothyroidism. I had put on over 15kg in a very short period of time, had very bad depression, fatigue, brain fog etc. I had been diligent in taking my daily medication but despite this these symptoms worsened. It was only after a visit to an endocrinologist in the UK, who diagnosed my Hashimoto’s, and some online research that I started making some lifestyle changes.
One of those changes was removing gluten from my diet. I love gluten and removing it from my diet has been one of the hardest things, and to do this day I wish I could eat gluten. Howeve
r I have learnt that if I do eat gluten the above symptoms return and I feel terrible. It can make eating out in restaurants hard but increasingly I find restaurants are understanding and accommodating of my food allergy. Even in Sri Lanka they were aware of what a gluten allergy is and went out of their way to make sure no gluten made its way into my food. In the US I had f
ound there was traditionally a higher awareness than in countries like Sri Lanka, and so I always had confidence in the waiting staff in restaurants there.
This was clearly an mistake. The other week I was over in Austin at SXSW (and yes I must blog about that too!) and had dinner at what used to be my favourite sushi restaurant there, Ra’s Sushi. I had a long discussion with the waitress about my allergy and she was great in trying to suggest options for me off the menu. I opted for a crazy monkey roll minus the tempura and she brought it with the eel sauce on the side flagging that the sauce may have gluten in it (so I did not eat that). The roll did come however with a lovely mango sauce which I did eat (it part of the dish and not served in a separate bowl).
What then followed was what I initially put down to be an extra severe hangover (this was SXSW afterall!) but by day 2 I still felt pretty out of it and not well. Must have been something I drank I mulled. I then went back to Ra’s for lunch and ordered the same thing but this time it came without the mango sauce. When I asked about this the waitress informed me that the mango sauce had gluten in it! As you can imagine I was royally p***** off by this and all of sudden realised why I was feeling so rough! How could they have been so callous with my health despite my very clear and careful flagging of my food allergy?! This is not some random, obscure allergy either, but one that many autoimmune patients suffer from.
Now a week and a half later I am still ill as a result and I feel it my duty to write about this to try to make people aware that a gluten allergy is not some “fad”. It is not something I choose not to eat. Nor is it all in my head. Gluten has a very real impact on my physical health and well being – and believe me I really wish it did not. I would love to eat bread or pasta or random sauces like a “normal” person. But I can’t. And a restaurant should take my, and other’s, food allergies very seriously. I am “lucky” in that I can still function – to the degree that today at work someone commented on how well I was looking. Great.
Let me describe to you what it feels like when I eat gluten – and why even if I look great I am actually feeling incredibly rough. Firstly there is the fatigue. Autoimmune fatigue is hard to explain unless you have actually experienced it. It is more than tired. I ache. I feel like I have not slept properly in days, and that I have a huge hangover and the flu all rolled into one. I feel like I have been doing extreme physical exercise or been on some extreme sporting event for days. Trust me I haven’t! Despite my over 10 hours of sleep I am exhausted – and I have had a fairly easy day with next to no mental or physical exertion. In fact I have had some awesome, fun meetings today – I should feel energized and reinvigorated. But no – I just feel like I have a really bad flu – I am shattered, I ache and my neck area (where my thyroid is) feels particularly sore and sensitive. Despite this I also know that I may have trouble sleeping properly – one of the great paradoxes of Hashimoto’s fatigue + sleep disturbance. Awesome combination.
That unfortunately is not the end of it. The other major symptom is brain fog. Just as autoimmune fatigue is hard to understand and describe so too is brain fog. Again I will liken it to a hangover – when you just cannot think straight – but far worse. I have next to no memory right now and have to write everything down on post-its. I struggle to clearly remember the bulk of some of my meetings – only the gist. I am struggling with people’s names (although I have never been good with names).
Brain fog however is more than just memory – it is also means I cannot think as clearly. For a split second today for example I could not remember how to look at the next week on my calendar. Basic and yet for a split second I drew a blank. I am extremely fortunate that I am highly intelligent and can compensate for my brain fog – as one of my colleagues generously mentioned today I was just a “normal” person and not my normal bright, on the ball, intelligent self. She said that she would never have guessed the difficulty I was having intellectually. I still got all my work done – but it was hard work and I was painfully aware of the gaps in my cerebral capabilities. Again I am fortunate but my years of experience also means I can cope and still deliver great work despite my brain fog but what about those with less experience? How would they cope?
This then brings me to my final point. Many of us autoimmune patients look fine, normal, healthy. You may never guess the battle we are going through or just how incredibly ill we feel. We have a chronic condition that we have to live with and deal with and we plod on, we persevere because we have to. Whilst on the one hand I am happy that I look great (and clearly my Karen Millen dress is hiding my gluten-related bloating well) on the other hand I do sometimes wish people could see just how ill I feel. I think if you could see how ill we patients sometimes really feel you would be in utter awe of us.
We do not want your pity though – but we do want you to try to understand. And we also want you to respect our health and our allergies and not be cavalier about it. If you are a restaurant and a customer states they have an allergy then you need to do your utmost to make sure that that is respected and if you cannot do that then be honest and open. I would rather have gone hungry than eat gluten that day and suffer the consequences for days and weeks later. Needless to say neither I or my friends will ever frequent a Ra restaurant again, and if you have a food allergy I would suggest extreme caution eating there – which is a shame as the sushi is awesome.
I might add as a final piece though that they clearly do not care as my complaint remains unanswered and ignored. Perhaps by reading this they will get a better grasp of what it means to ignore someone’s allergy and realise that as a result of their disregard for my allergy I now have to suffer and struggle through these horrible symptoms. Maybe this one post will mean that they will start to take food allergies seriously and that no other autoimmune, or other, patient will have to needless suffer as a result of one dinner out. Let’s hope!
PS. For full disclosure the sushi in the photo is one I made not one made by Ra’s sushi. And it was 100% gluten free.
This time of year is often a time of reflection. It is a time of thinking about what you really want for Christmas – what items go on that famous Christmas list. What are the things you would really love Santa to bring you – and being Santa you can wish for whatever you want.
This year there were some practical things on my list – including an electric blanket and a pasta making machine (both of which I got – yay!). There were also though some wishes and hopes on the list. I have one wish every year and that is for donations and miracles for the dogs in the Bucov shelter that I support through Hope for Romanian Strays. With now over 1500 stray dogs living in the shelter (with an original capacity for 700 dogs) and of those over 300 puppies, there is never enough funds to help them all. The authorities do not provide enough food for that many dogs so it is up to us, and our supporters, to provide the additional food and care to try to keep the dogs alive. There are constant medical and emergency cases, like newly born puppies or injured dogs dumped at the shelter gates – essentially being left there to die. My wish did partly come true as thanks to some generous supporters and fundraising the dogs did get a Christmas meal. This is of course a drop in the ocean but at least they did not go hungry on that special day.
My other Christmas wish this year relates to work. Having left ZS in March I have gone back to working as a freelance consultant, culminating in an extremely busy December. However with my contract coming to an end in January I am again looking for the next opportunity. Whilst I would love the stability of a permanent job, the reality is there are not that many permanent roles for someone with my level of expertise and seniority. I also have such a huge passion (and depth of experience) for my area of specialisation (healthcare digital and social media strategy) that I have no desire to even consider anything else (except perhaps animal rescue!). I do also love the flexibility that working as a freelance brings and so I am putting feelers out again for some more contract work. As always it is a balancing act between finding new opportunities and meeting the requirements for the current contract – and this is one of the down sides of freelance work. I will have to start looking for the next opportunity whilst working flat out on the current contract – and find time to rescue dogs and take care of my health and personal life. I’m tired already just thinking about it! And so I make my wish and I hope that one of my tweets or posts ends up fortuously in front of the right person at the right time and I end up with a new contract for 2016. Fingers crossed ….
Linked to the above wish is another work related wish – a new laptop in the shape of the new Mircosoft Surface Pro. Sadly this is not a wish that Santa was able to grant this Christmas because Microsoft decided that Europeans are second class citizens compared to the US and that we have to wait 6 months to get our hands on this new shiny gem. My wish will have to continue being a wish only until March when I hear the Surface Pro will finally go on sale in the UK. Annoying.
My final big Christmas wish of course has to be health related. If you follow my posts then you know I have an autoimmune disorder called Hashimoto’s. I think most patients with autoimmune disorders wish for improved (or at least stable) health. When I am happy and love what I am doing (and get plenty of sleep, eat well, etc.) I have no issues whatsoever with my condition. Sadly if I get over-stressed, sleep badly, or slip up on my food (e.g. eat something with Gluten in) I end up feeling pretty pants. Of course I plod on but there will always be a wish for that magic pill to come along and make life easier – or indeed cure my condition. That will stay a wish for a long time though as that is unlikely to happen! My other, more realistic, wish therefore is that more people are educated about the reality of autoimmune diseases, including doctors.
I got to spend my Christmas this year with my family, including my brother who is a GP. I was really saddened to hear that he had no idea the impact gluten (and diet in general) can have on patients with autoimmune diseases. I am not sure if he took my gluten free diet that seriously – I suspect like many doctors he felt that just taking my pills should be remedy enough. This makes me sad as I know the difference lifestyle makes on quality of life, and disease progression, for many patients with autoimmune diseases, but if doctors do not provide information or even support in this area then life just gets that bit harder. There really is nothing more frustrating that having your condition dismissed by your doctor – or indeed your online research either. Yes there is a large amount of incorrect and bad information online, but there is also a huge amount of life changing, accurate information out there. The fact that some of this comes from patients makes it no less valuable or accurate. Afterall how can a healthy doctor really understand what living with an autoimmune condition feels like and who are they to judge how we feel if we make lifestyle changes? And so I wish that more doctors listen to their autoimmune patients and try to understand their needs and conditions better. I wish more autoimmune patients had access to a great doctor like I do here in Switzerland.
If I could have my wish for a healthy 2016 and a new contract or opportunity to come true then I can also help make my first wish come true – I would be able to make a large donation to my charity and thereby rescue the lives of more vulnerable, neglected dogs in Romania. So should you hear of any opportunities (perm or contract) then do let me know … and you can do your bit to help my wishes come true!
I recently submitted my proposal to speak at SXSW next year on “Wearables: saving lives and improving outcomes” and the public voting on proposals starts today. It would be a dream to speak there but I know the competition is stiff so I have all my fingers and toes crossed and will be asking everyone to vote for me!
If you follow my blog you may have read my posts from earlier this year. That was my first time at SXSW and I have to admit it was a life changing event resulting in me leaving my job to go back to focus on my true love – digital strategy and innovation in healthcare. The event was incredibly inspiring, not only seeing such amazing innovation but also seeing how it could be applied to improve the lives of patients with chronic diseases like myself. As I listened to some of these amazing talks I thought how great it would be if I could also share some of my knowledge, passion and inspiration in this area, and so when my friend Jackie Cuyvers suggested I submit a proposal I went for it! I was actually interviewed for national TV about the impact of wearables so I thought why not speak about this topic!
I wanted to share want inspires me the most – how technology is having such a huge impact on patient’s lives and the revolutionary changes that are happening in healthcare as result, not just in terms of technology but also in the culture and mindset change. As an autoimmune patient myself I have a huge amount to thank for the internet, thanks to the information I found that led to my diagnosis, and the improved quality of life, but also in the inspiration from other patients that drove me to be an empowered patient and demand better health from my physicians. Back then I had got to the point were I could hardly get out of bed any more and had such extreme brainfog I was struggling to complete sentences; I now lead a normal, active life – thanks to the information and support I received online.
It is this that drives my passion at looking how innovation and new technology can do more for patients and help turn other people’s lives around, or indeed save them. In January I spoke about how social media is saving lives and now I want to speak about how wearables also have this capability. Wearables is of course the big thing this year, with a huge swathe of new devices of all shapes, sizes and uses being launched. The big ones are off course in the “health & fitness” arena like fitbit or new smartwatches such as the Apple watch. Everyone is talking about them and I have quite a few friends who have purchased new smartwatches to track their sports activities (I myself have invested in the new Swimmo watch). These devices are fantastic to help the reasonably healthy get even more healthy. But what about those that are not well or fit enough to run marathons or swim kilometres?
The real impact of wearables will come in how they are developed and adapted for those people who face real health challenges, whether it be Alzheimer’s or severe Asthma. Being able to wear a device which provides live support and information or that conatcts HCPs or family in the case of a medical emergency can have a huge impact in improving a patient’s life. Some options in this area already exist but few wearables on the market have been specifically designed for this purpose. Right now much wearable tech is focusing on the lucrative “fitness” and consumer markets but once we start to see more wearables being specifically designed for certain diseases then we still start to see some incredibly inspirational outcomes thanks to this technology.
It is on this topic that I hope to head to and speak at SXSW in March next year, with my friend Jackie (who will be speaking about social media listening and the implications of culture and language – think about the British and American understanding of the word “pants”). I would ask that you please help me achieve this goal by voting for me here by searching for “Fulford”, and don’t let me go alone – please also vote for Jackie too!
For full details of how to vote have a look at this document with instructions that I put together. The final thing I would like to say is that for every vote I get I will make a donation to my charity Hope for Romanian Strays which works tirelessly to rescue stray and injured dogs in Romania – so vote for me and help stray dogs!
Yesterday I read an awesome post by the MightyCasey in response to an astonishing post by a certain Niam Yaraghi in USA Today. According to said Niam Yaraghi patients are incapable of managing or understanding their own health and should leave it all entirely up the medical professionals. In essence in his article he treats patients like small, stupid children who have no idea what they are talking about and, whilst capable of making highly complicated investment decisions, are not capable of making basic healthcare decisions.
My first jaw dropping moment was when I read:
“Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. How can a patient, with no medical expertise, know that the treatment option that he received was the best available one?”
“……….” That’s me being speechless. Really? So we are not capable of realising that we are getting better or worse? And doctors always have the answer to whether we are getting better or not? Looking at this one point I go back to my own experience. I had been diagnosed with hypothyroidism, was on the appropriate medication, and, according to the specialist I went to see, I was totally healthy and the severe fatigue, depression, 15kg weight gain, etc. was all in my head. This was a doctor that followed Niam Yaraghi’s view that patients were total idiots and had no idea what was going on with their own bodies. As it happens I am not a total idiot and I knew the doctor was not right (shock horror! But doctors are always right according to Mr Yaraghi!) and something was wrong. I went online, self-diagnosed and then got got a second opinion from a specialist back in the UK. It turned out that stupid patient me was actually right and the specialist I had first seen was wrong. I had Hashimoto’s and I needed to do more than just take my pills to get back to normal. Had a acted like the USA today article says I should act as a patient and just trust the doctor I would by now be too sick to work or write this blog, or worse.
This also leads on to the second point in the quote namely that patient’s cannot possibly have any idea about what the best treatment option is. Casey covers this very nicely in her post by flagging that a doctor who graduated years and years ago, and who may not have remained totally up to date in your specific condition, may in fact not have the best idea of the latest medical breakthrough in this disease. This is especially true for patient with rare diseases, who are often much more knowledgeable on the latest medical news in their disease. This is all thanks to this amazing tool called the internet and social media. I myself for example informed my doctor of some new trials happening around timing of taking thyroid meds – the established knowledge is that you take the pill in the morning but new evidence suggests night time may in fact be better – my doctor had not seen this bit of news. This is not to say that all patients know more about the latest thing than doctors do but you cannot discount the knowledge of patients with chronic diseases who spend considerable time researching online as well as sharing experiences with other patients.
Next our article goes on to say that people are able to make complex financial investment choices as they have a baseline with which to compare the end results but that patients have no such thing for their healthcare. He also goes on to say that we are not capable of judging the short and long term outcomes – only a doctor can do this. Admittedly we cannot say how many years we will have left to live – but frankly no doctor can guarantee that either. What we can tell you is by how much we feel better – and we do have a baseline of our health prior to sickness. In my case, for example, once I got the right diagnosis and made the appropriate changes, my depression disappeared, I was able to function normally again and I lost some of the weight (sadly not the entire 15kg). This to me is a pretty good indication that my healthcare was improved. In terms of timing I had a small positive short term outcome and currently the longer term outcome is looking pretty good too (although still not lost any more weight). I have also had this disease long enough to have a good idea of what my blood results mean (at least in terms of good and bad) and I can tell that my blood results are improving.
“While the interaction between patients and their medical providers is an important element of the medical care process, it is not the most important one. To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews.”
Finally I would like to point out that slighting the importance of the interaction between patients and their medical providers is also somewhat shortsighted. Admittedly in many cases it may not be the most critical element but it will probably come in a close second or third, whilst in other cases it is indeed the most important element. If the interaction is terrible a patient may ignore all of the doctor’s advice and turn to other sources, which may endanger their lives, or simply become less vested in their healthcare, less adherent and in future lie to their doctor – also resulting in negative outcomes. After my personal, horrific experience with the Spanish endocrinologist, I could have just fallen deeper and deeper into depression and stopped going to seek medical help altogether, instead I ended up finding the most amazing doctor I have ever, ever had (Dr Kruhl in Zurich) and who I trust entirely with my health and my life. If she tells me to do something I will, had the Spanish endocrinologist told me to I would have ignored her. I think it is fairly clear from this just how important the patient physician interaction is.
When it comes to online reviews they also can have a role to play – firstly I found my amazing Dr Kruhl through online reviews. Secondly I value the input from other patients with similar conditions far more than a random pick of a doctor’s surgery based solely on their location or position in the yellow pages. It is also not just about the medicine any more. It is about having the empathy, the understanding, the interaction skills as well as being digitally adept enough to stay up to speed with the latest thinking. You can have the most medically adept physician but if his expertise has not been kept up to date and he treats his patients like stupid little nincompoops then his outcomes will not compare to an equally medically adept physician who is able to empathise and interact with this patients, and share the latest digital support tools with them.
So I say to you Niam Yaraghi, as a patient – we are not incompetent nincompoops incapable of educating ourselves around our healthcare and of making valid decisions around our healthcare. The days of your type of thinking, when doctors were revered and were never wrong, and patients were treated like irritating, stupid little children are drawing to an end. In fact this article highlights the dangers of people with no empathy or understanding for patients, for today’s changing healthcare dynamics and for the real world, of getting involved in the healthcare system. I would challenge an academic technologist and economist to get out of the theoretical environment of the university and go out and talk to empowered patients and patients with chronic diseases before you label all patients as stupid and incapable.
Wearables are this year’s hot item. They are trendy and all the cool kids want one. They can link to your mobile, they can tell you your heart rate, how far you have run, calories burnt and they are shiny. I want one.
Or rather I want another one and this time I want one that actually suits my activity and lifestyle not that of some marathon running health junky. I also want a wearable that actually has a decent lifespan – both in terms of battery life but also in terms of years of use.
My first request, that of a wearable that suits me, has been quite hard to find. The majority of consumer wearables and health apps are heavily focused on jogging or walking. My recently purchased Samsung S6 has a health app, S Health, which seems okay, ticking quite a few boxes, as long as you are into running. You see my problem is that I do not jog and do not ever intend to jog (my body is not made for running). I walk a fair bit but not as a “sport”. The only real sport I do is swimming. Whilst the app does give you the option of adding a whole array of other sports the parameters for these is very restricted, and IMHO pretty rubbish. I am a “proper” swimmer, and even had lessons a few years ago to perfect my strokes. I swim a reasonably paced front crawl and I try to swim between 2-3km a day and I swim 1km in about 15 minutes. My S Health app however only gives me the variable of time – I cannot input what strokes or distance along with time. I swim faster than a lot of swimmers in the pool, doing a strenuous stroke, and what I swim in 30 minutes is very different from what they swim. Equally those powering past me in the other lane are swimming way more laps in that time frame. Yet the S Health app does not allow any input other than time. That is pretty rubbish.
So how about buying a wearable for swimming? Well I have. Been there done that. I bought a PoolMate Swimmers watch which counts my laps, speed, distance, efficiency and time. I loved it! It was great and allowed me to concentrate on my swimming without having to worry about counting laps. It also finally allowed me to get an idea of how I swim and how many calories I burn (turns out I am quite an efficient swimmer). Sadly though it is not “smart” so I cannot synch it to my phone or track my progress with an app. It does however come in colours other than the usual dull black (I opted for the baby blue version).
Then there is the lifespan of the product. I bought my PoolMate just over a year ago and have been using it on a very regular basis, but recently it has stopped counting laps properly. I am gutted as I now have to go back to counting my laps. The poolmate is however not the first wearable I have had – I had a Nike Fuelband too. That also turned out to be cool to start with before it went demented. In the case of the Fuelband I gave up on it when I had done a 2 1/2 hour hike up a Swiss mountain and the stupid thing told me I had not met my target of steps for the day!
Both of these products started with high cool and wow factors and I was very happy with them, only for them to then shatter my happiness by losing accuracy. As I look at many of the new wearables and technology hitting the market I notice that we do not seem to be that fussed anymore about product lifespan. Many of the new smartwatches may be mega shiny but they often only have a battery life of a day! What is the point of a watch that you need to charge every day?! The same actually goes for phones – but as long as my phone last a day with full use I am happy (my old iPhone 5 did not manage this at all in the end – it barely made 1/2 day). We seem to have moved into a world where we are happy for products to have a short lifespan and batter life – or is it in fact that we have just accepted that this is the new world because this is what the manufacturers offer us? Newer phones come out with more shiny functionalities but not much improvement on batter power. Wearables last a year or two and then there is the expectation that we will upgrade or buy a new one. Is this right? I feel like it shouldn’t be.
That said I have just gone and followed the trend in the purchase of my latest wearable. Fed up with my poolmate I clicked on an advert on Facebook (yes they sometimes work!) to a kickstarter page for the Swimmo Smartwatch. Looking at the specs and the description I got very excited. It sounds like exactly the kind of wearable I am after, as a non-jogging swimmer. It counts laps, tracks my swimming, has a heart monitor, is linked to an app and tells the time. In fact I got so excited I pledged! What I didn’t think about was the battery life and whether it would actually be better to wait until it was on the market to see reviews and whether it actually works. But no – I got lost in the shiny shiny excitement, and a bit also in the “ooooh” of being involved in the kickstarter stage. I suspect my new watch when it comes will indeed be shiny but I will probably have to charge it everyday. On the other hand I like their Facebook page – they are clearly really into swimming – and I love the photos on their Facebook page too 🙂