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The eternal tightrope of “naive to tin foil hat”. My time in hospital recently hammered home an uncomfortable truth, something which seems to permeate all areas of life but is especially obvious in healthcare. That is the importance of a healthy scepticism to authority.  Over the last few years, heavily assisted by the internet, the levels of total nonsense information we all encounter has gone through the roof. A seeming disregard by far too many to science and generally everything which pulled us out of the dark ages. However the answer to this, in my opinion, is not a slavish obedience to anyone wearing a stethoscope around their neck/with letters after their name etc. Afterall It was not that long ago that some doctors walked onto our TV screens, stared at us in the eyes and told us the health benefits of smoking.  The boring truth, as in all areas of life, is somewhere in the middle and we must lean on science and the experts while feeling no discomfort in challenging authority and trusting our instincts. I witnessed time and time again mistakes and poor information during my time in hospital. I certainly don’t believe this was from a place of malice however if this hadn't been challenged the negative outcome for me would have been the same.  When you’re feeling unwell it feels all too easy to handover to the experts entirely and sit back and relax. Unfortunately unless you have advocates around you 24/7 we simply don’t have that luxury.  From an AD perspective I was like almost anyone in the UK, in that we believe our route for any kind of complex health condition is as follows; GP, referral to specialist, see the specialist, if they can’t help you’re more or less at the end of the road. This is simply not the case. After years of seeing a local dermatologist and being told I was at the end of the road I then did my research and went to a London specialist who said I hadn’t even “scratched the surface”. They then proceeded to treatments and medications I’d never been offered after decades of suffering with my condition. I did learn something fairly recently which blew my mind after speaking to a doctor who is heavily involved in skin condition research. He said that in order to prescribe the latest ground breaking skin treatment, dermatologists have to keep up and keep themselves educated which many simply do not. They therefore may be telling their patients that they’re essentially out of ideas simply because they themselves have not kept themselves up to date with the latest treatments. On the other side of the equation a lot of us feel a sense of desperation which can make us vulnerable to the snake oil salesman as “it probably won’t work but I can’t take the chance in case it does”. Which I fully understand and empathise with and I myself have spent plenty of money on what was ultimately nonsense.  To summarise; we all need a “healthy” level of scepticism and what exactly this equates to is almost impossible to define. Lean heavily on science and the professionals but don’t ignore that voice/your own instincts when you know something isn’t right.

In my opinion turning up to the hospital and letting yourself be swept along by the system is a recipe for disaster. Rightly or wrongly there are a lot of steps which can make things a lot more comfortable and effective. Advocacy This is without doubt the most important piece of advice I can give you. If you are too unwell or unable to advocate effectively for yourself then you need to have someone to advocate for you. The system is flawed and unfortunately the “squeaky wheel” gets the best care. Noone will know your needs like your close friends and family, they have to speak up for you and push. It feels very unBritish to make a fuss but this is often the only way to get things done. Food and supplies The food is dreadful, I’m sorry but it is. I certainly wasn’t expecting michelin starred grub but I think the dinner being a jacket potato every single night is a joke. You need people to bring you supplies or you might find yourself going crazy. Be ready for a calm but firm fight You unfortunately need to psychologically prepare yourself to push and fight for what you need. It’s almost unavoidable. Us AD suffered will be very used to that. Doctors appointments The doctors always come round outside of visiting hours, if you’re family, in my opinion, ignore the visiting hours and make sure you’re there for these appointments. Have your questions prepared as you never really know when they’re going to show up. Notes Write notes of everything; medication times, questions for the doctors etc.  Don’t take the health care providers word as gospel We often can feel uncomfortable challenging the professionals however, as in every industry, the professional can regularly get things wrong. This happened multiple times throughout my stay; wrong medications, incorrect information, having a necessary surgery cancelled, so be prepared to challenge the medical advice.

A few things to be grateful for It wasn’t all doom and gloom from my time in hospital, as flawed and stretched as the NHS is there’s still so much to be grateful for. Here are my examples: Walking out of a 10 day hospital stay without having one thought on any financial impact (beyond the lost days at work) is something we take for granted in the UK. In many parts of the world, including many developed ones, there are people one hospital bill away from poverty. I do love to be part of a system that when you’re sick you don’t have to deal with the added stress/strain of any financial pressures. There are doctors, nurses, HCP’s within the system who are wonderful, caring people who must be very resilient to not be completely worn down by a system so stretched. It was such a breath of fresh air whenever I felt under the care of someone who seemed to genuinely be concerned about my welfare. Towards the end of my stay I had to have an epidural blood patch and the surgical team couldn't have been more kind and professional.  Basic protocol seemed to be followed very religiously, my blood pressure etc was taken very routinely and I felt like staff often had clear systems that they implemented well. Every room I was in was always kept pretty immaculately clean, from the bins being changed every day to the bedding being changed whenever it was requested. Cleanliness never felt like an issue.

A fairly eye opening experience I recently had a ten day stint in hospital due to a CSF leak/intracranial hypotension. In layman's terms the fluid around my brain was leaking causing my brain to drop in my head. I’m planning on doing three posts about this experience; pros, cons and some (hopefully useful) advice. Starting with the cons. I feel like the NHS is a symbol of national pride and so it often feels as if it’s unacceptable to discuss any kind of flaws in the system. However some of the care I received/witnessed was concerning to say the least. Of course there were some wonderful health care providers and I understand that many of the issues are simply a lack of resources. However this doesn’t change the fact that without adequate advocacy, time spent within an NHS hospital is now something which fills me with dread. Please see below a few of the examples of my time in hospital: I was held in A and E for around 24 hours before I was transferred to a ward. The main symptoms I experienced was excruciating pain while sitting or standing. I was abruptly awoken on the second day, a bowl of cereal put in my hands, sat bolt up right and left in around 5 seconds flat. The pain and nausea from being sat up was immediate and extreme. I pressed the nurse call button but nobody came for around 15 minutes, the whole time I was in agony, I then started to shout for help, still nobody came. Eventually by chance a nurse came past and helped lay my bed flat, this was probably around 20 minutes after I pressed the help button. This was something I witnessed from multiple patients on multiple occasions. Call buttons not being answered and patients having to shout for help for extended periods of time.  As anyone with AD knows our treatment routine is incredibly important, a daily shower then followed by the application of moisturisers etc is essential in managing our condition. When coming up to the 24 hour mark in A and E I made it clear that I would need to have access to a shower soon. This was met with resistance and involved a significant amount of pushing to make it happen. It frankly felt like the usual dismissive attitudes we all face as skin condition sufferers and the imbalance of perception towards the care needs of some conditions compared to others. Also, I was placed in a side room in A and E as I initially had suspected Meningitis however I would of course have to leave this room to go to the toilet. This meant that multiple times I was walking (or more like stumbling) through a packed A and E with what could have been a highly contagious and dangerous virus.  Again, my main symptoms were excruciating pain while sitting up and an extreme sensitivity to light and yet very regularly a health care provider would walk into my room immediately turn on all the lights and attempt to sit me up.  There were also numerous instances where pressure was applied to do what was easiest for staff rather than what my care needs were at the time. As an example, as mentioned, I was vomiting and in horrific pain if I was sitting up or standing but they would always try to get me to go to appointments in a wheelchair rather than on a trolley. If you're on your own and feeling awful it's all too easy to give in to this pressure. It also makes you feel very uncomfortable, as if you’re just making a fuss. In the first ward I was in I was being woken roughly every hour throughout the night. I of course appreciate that sometimes there's no getting around it, for example medications or blood pressure checks etc. However I was having blood tests at 4:30am every day, had someone come in at around 1am to check the stock of a little tupperware box in the room and had someone shout from the doorway at around 2am "Do you have a cannula?!". Leading on from this it was rare I felt any compassion, empathy or just general human interaction. It all felt very cold and clinical.  Something which I also find quite concerning is that visiting hours are always after the doctors have done their rounds. Often patients are very unwell and it makes sense for the family to be there to support and make sure the right questions are being asked. Considering the pressure placed on A and E due to a lack of available beds in the wards I felt like the system moved very slowly from within the wards. I could have easily been out of hospital a good few days earlier, with my bed freed up for another patient if there was a bit more urgency in providing the necessary treatment/procedures.  I understand that the NHS is stretched but in my opinion this doesn't change the fact that it is either fit for purpose or it's not. I don't wish to get political but I do hope that Labour use their large majority to do what is necessary to reform. The primary concern I have is for those without a support network and without the ability to effectively advocate for themselves. My brother has autism and I now know that if he was to ever be in hospital someone would need to be with him every minute of the day.  It certainly wasn’t all doom and gloom and there is still much to be grateful for having access to the NHS which I’ll cover in my next blog followed by some advice which I think can really help make the experience that bit easier. Spoiler alert: have someone who can bring you some different meals from time to time!

Apologies for the gap in my posts/going off topic for this one Obviously my blog is supposed to be AD related however I thought it was worth sharing my experience over the last few weeks. I'm still feeling pretty ropey so I'm going to keep it brief: It started with a very weird headache, not your usual banging but more like an intense pressure sensation. It was also significantly better laid down than sitting or standing up. I also had quite severe pain in my neck and back. After two days of the symptoms increasing rapidly we called 111 and it was recommended I go to A and E as they suspected I had Meningitis. I then spent the next 24 hours in A and E while they tried to find me a bed. After getting to the ward I had a lumber puncture which involved me being in the fetal position while a doctor inserted a big old needle in my spine to take and then test some of my spinal fluid. This showed that it wasn't meningitis but my MRI results showed it was a CerebroSpinal Fluid leak which then caused intracranial hypotension. This is where there is a tear in the dura surrounding the fluid in your spine/brain which then causes the fluid to leak out. This drop of pressure caused my brain to drop in my head. I then had an epdural blood patch which invovled once again laying in the fetal position while a nurse took blood from my hand which was then passed over to a doctor who injected it into my spine. This is supposed to help "patch" the tear in the dura. I have to say this is the first time in my life I've felt that I might be in a bit of trouble (besides the mental health risks from AD). I have never felt so sick and in pain. There was a point that if I was upright at all I would be throwing up. One small mercy was that my skin held up for some bizare reason. But this did cause further complications as I needed to have my daily shower to maintain this but being on my feet felt impossible. I'd literally have to lay down multiple times to reset and go again over the course of a 5 minute shower. Since getting home I do feel like I'm slowly on the mend, mornings are difficult but after an hour or so the pain in my head subsides and is around 75% better. However I do have quite significant double vision which is quite debilatating. Bed rest is supposed to be very important for the healing process but it's frustrating having to stay laid down all day even if I can be relatively productive with my laptop. While we all know the NHS can be a mixed bag I have to say some of the things I saw/experienced were scary. I continue to be incredibly lucky in that I had my Mum and my wife there with me the whole way through. It's terrifying the thought of being in that situation and not having people to advocate for me.

An amazing service by an amazing organisation Do you remember those times when you were going out and your Mum would tell you to take a coat, you wouldn’t and then would not only immediately regret it but would outright refuse to admit you were cold? Well this is one of those situations however I’m going to be mature enough to admit….Mum was right.  She has been telling me to try this for years and because I’m a stupid bloke and didn’t want to go down the route of “make-up” I shied away from it. However, after some recent work with Changing Faces I once again came across their Skin Camouflage service and thought it was time to give it a go. https://www.andyandad.com/post/my-blog-post-with-changing-faces I felt like a bit of a fraud going in as this service helps some of the most courageous individuals in our society. For example, people who have acquired severe burns or scarring, who have not only overcome a life-changing event but also have to handle life with a visible difference afterwards. However, my practitioner couldn’t have been more lovely from start to finish and the information was all very manageable.  My skin has been reasonably good recently so I didn’t think it would make too much difference but when I was shown the mirror it immediately gave me a lump in my throat. It made a VERY big difference and it certainly didn’t look like I was covered in make-up. I see this as another tool in the toolbox for when I need it. It’s so reassuring to know I have this option. Social events in the calendar can be so daunting as I just never know what condition I’m going to wake up in and I believe the anxiety alone from this lack of control can worsen my symptoms. However, having the Skin Camouflage products feels like I’ve been given an element of control and an option for if the worst happens and I do wake up with a flare. We went to our good friends (very hot) wedding a few days ago. This scenario would usually have been massively anxiety inducing as there was a lot of people I didn't know and my face would usually be very flushed. However just a light covering of skin camouflage kept the redness at bay and allowed me to enjoy the day with my beautiful wife. This is something that many take for granted but feels like such a gift to someone like me. At the end of my appointment, I was sent away with paperwork and guidance as to exactly what products I needed. I was told that this would be sent to my GP to be put on prescription, but these are at GP discretion and vary between health boards. As such I have to decide whether it’s worth the fight to try and achieve this. In my opinion many healthcare professionals still don’t truly appreciate the catastrophic emotional toll of visible conditions and the dangerous psychological impact they can have. This can create some push back and reluctance to provide what is needed. For example, my symptoms are highly photoaggravated and I therefore have to apply suncream multiple times per day. A letter was sent to my GP for this to be placed on repeat prescription by my consultant, but I know for a fact this won’t be done without applying significant pressure.  Nevertheless, I would strongly recommend this service to anyone. It doesn’t mean applying tons of make up to your face every day if you don't want to. It can simply be an option to have in your back pocket and I thought the results were pretty amazing. You can find more info below: https://www.changingfaces.org.uk/services-support/skin-camouflage-service/

Normally a title like that is for some glamorous beauty influencer but that’s not quite the angle I’m coming from! So if you’re anything like me when I’m following someone online looking for answers whether that’s for the gym/investing etc I’m always keen to know exactly what that person is doing. Of course everyone has different circumstances and what’s best for them and what works for me may very well not work for you blah blah blah! However this is currently what I’m doing to keep things in control, and for the last few weeks things have been fairly reasonable: Zerodouble gel This is my moisturiser which I also use as a shower gel. When I first went to St Johns Dermtology in London one of the first thing they did was trial me on all different types of moisturiersrs and this seemed to be the best. Anyone with AD, Eczema, Psoriasis etc will know that a good moisturiser is your foundation and is absolutely essential. I was using Epaderm for a long time but I found this way too thick whereas zerodouble is a good level. You can also get it off Amazon for when I mess up my repeat presceiption/the pharmacy isnt able to get hold of it for any reason. I put this on all over during and after my shower and then again all over before bed. Polytar Scalp Shampoo I wash my hair with this everyday and I am lucky to have very little scalp issues. When I was younger and more recently during my crazy flares this wasn’t the case so it’s nice to have this largely under control. Something I used in this past when things weren’t under control was Betacap, this can sting a bit but I found it to really help. Betnovate RD This is a cream I use before bed on my face, it’s a light steroid so not a long term solution and I’m currently down to using this 3 times per week with the aim of using only once per week. Over the last few years I keep waking up with my face being red and sore, despite a fresh pillow case every night, hypoallergenic pillows etc. This certainly seems to help with this, as does Daktakort. Abrocitnib Jaks Inhibator The main medication I take is a tablet once per day called Abrocitnib which is made by Pfizer. The National Eczema Society has a great article all about this explaining how it works etc. Ive been taking this for around 3 months and so far so good. Neck down in particular things are very much in control. This does require blood monitoring but the pro is that it is a daily tablet rather than a weekly/biweekly injection like some of the other equivalent treatments. https://eczema.org/information-and-advice/treatments-for-eczema/abrocitinib/ Protopic Ointment I apply this after the shower on my face and leave it for around 30 minutes before wiping it off as I find it doesn't soak in and it can clog my pores and give me some nasty spots. This is an immunosuppressant medication which helps to calm the inflammation on my face. La Roche-Posay suncream After my last appoinment at Guy's hospital the consultant believe that I needed to be more proactive with suncream as my symptoms did look photo aggravated. They suggested I apply this every four hours no matter the time of year. Fexofenadine The “Atopic” in Atopic dermatitis means a sensitivity to allergens and I find taking one of these helps quite significantly. This allergen sensitivity has led to issues with my eyes and general hay fever symptoms. Fexofenadine does seem to control these symptoms quite well. Aciclovir tablets Unfortunately my eye related issues have caused what was essentrially a cold sore on my eye a few times which has left scarring and impacted my vision. Aciclovir helps reduce the likelihood of this happening again in the future. Hylonight/Hyloforte/Opatanol/Ikervis Eyes issues are obviously not directly skin related but a side effect of the medications I've taken and again my sensitivity to allergens. This is what I take eye drop/ointment wise, for the last few years this has kept my eyes completely under control. For the longest time my eye issues were constant and debilatating, the only way to calm them down was to sleep it off. Nowdays Opatanol first thing in the morning, followed by Ikervis shortly after, Hylonight before bed and Hylorfore used if and when seems to have done the job. Nasacort Nasal Spray My nose was blocked every single night before I started using this (along with a nose strip) and I believe it really helps me sleep. Mirvaso I go into a bit more detail about my experience with Mirvaso on a previous blog post, however I’ve found this to be an excellent emergency tool for when my face is extremely flushed. https://www.andyandad.com/post/my-experience-with-mirvaso I wouldn't be surprised if I've missed something and there's also other medications/treatments which I don't use on a regular basis. If you have any questions about your own routine or mine please feel free to drop me an email!

https://www.britishskinfoundation.org.uk/blog/skin-disease-and-the-impact-on-family Skin disease and the impact on family Andrew Collinson and his family discuss the impact of his severe eczema. This post contains references to a specific medication prescribed as part of a personal care plan. If you are struggling with eczema, please contact your GP and/or dermatologist as each person needs to be assessed on an individual basis. Andrew Collinson’s family provide an insight on the impact his chronic eczema has on the wider family At the British Skin Foundation, we know that skin conditions not only affect the patient, but also those around them. The impact skin disease can have on a person’s wider family is sometimes forgotten, but it’s important to recognise the supporting role of loved ones too. The lifelong impact of eczema Andrew's skin during a flare Andrew Collinson has lived with eczema since he was a baby. Finally at 30 years old he has found a treatment that works for him, Dupilumab, giving back some control over his skin after years of suffering. Andrew’s mum, Louise and his wife, Donna have offered their perspective of living with someone with a severe skin condition. With one in five children suffering from eczema, it’s one of the better known skin conditions. After experiencing eczema herself as a child, Louise initially thought that there would be an easy fix for Andrew’s skin. In fact, it was just the beginning of a long, emotional journey for Andrew and family. Nowadays we can search online and find self-help information very quickly, but when Andrew was a child, information was harder to find. Louise had to fight to get referrals to a dermatologist from the GP after attempting to control Andrew’s eczema with creams and bath oils alone failed. The time-consuming nature of a chronic skin condition After advocating for Andrew and his condition for years, Louise explains how time-consuming his care was, referring to it as a constant in their family life. He had brutal daily routines for washing and creaming which needed to be strictly adhered to. I needed to be vigilant with his skin, always looking for signs of infection, keeping his nails short, bathing him, using the correct washing powder, and changing his bedding regularly. Aside from the gruelling skin routines, Andrew’s mental health suffered greatly. Dealing with bullies and embarrassment on top of being tired and unwell took its toll. Simple pleasures and normal everyday activities for children were a challenge. Louise explains, ‘All aspects of our family life had to be considered with Andrew’s eczema in mind. Sleepovers were difficult for Andrew as he needed bedding washed with non-biological washing powder. He would often bleed on bedsheets at home so would be worried he would do this at his friend’s house. He couldn’t take part in school swimming lessons as he needed time to shower and cream down after.’ The impact even stretched to holidays and family days out. Louise continues, ‘We were unable to book a caravan holiday as there was no bath. If we went to the beach, we would take a big bottle of water mixed with his bath oils to wash him down and then apply his cream. It affected my mental health too because I could see the enormous impact it had on so many aspects of Andrew’s life.’ The emotional impact of eczema on everyone Andrew and Donna Whilst his Louise worried about Andrew, years later he also feels a sense of guilt for the impact his condition had on their family. His parents spent endless hours researching his condition and painstakingly caring for him. Even though it’s not his fault, the mental anguish Andrew feels is still there. With confidence at an all-time low as his friends began to date, Andrew describes his wife Donna’s interest in him as one of the biggest shocks of his life. Forever worrying he’d have a flare up and she would no longer find him attractive, Andrew needn’t have panicked as Donna supported him through some of his lowest moments. Even though they have been together a long time, dealing with the condition is still stressful. Donna explains, ‘It’s hard not to feel hopeless when treatment plans have failed, and you don’t know where to turn next. We try not to dwell in negativity and instead formulate a game plan to fight the next battle, but it can often be too overwhelming for us all.’ The endless toll of eczema Eczema on Andrew's face At times, the couple has felt isolated and lonely, missing out on larger group activities and travel opportunities due to worries about food, alcohol and washing facilities. Donna explains, ‘We both thrive in nature, so when we got married our dream was to climb to Everest Base Camp on our honeymoon. Sadly, the disruption to Andrew’s diet and various hygiene challenges made it a non-starter for us.’ It’s not just leisure and travel that’s affected. The pair likely won’t have children, partially due to concern of passing on severe eczema to their baby. Donna continues, ‘Eczema has been the theme tune of our whole relationship really. All events and moments are framed by it, either by the struggle, the strict routines, or even just by being grateful for the times his skin is clear and under control.’ Whilst there’s never a day that Andrew’s eczema is not mentioned or considered, his new medication has helped the couple feel more confident. Donna adds, ‘It’s not perfect but we’ve come a long way and I feel like a huge weight has been lifted from his shoulders.’ Andrew's skin is much better following treatment Andrew’s top tips for dealing with a chronic skin condition If it’s been a while since you visited a dermatologist, try again! New treatments and medications may have been approved since your last visit. If you aren’t happy with your doctor or dermatologist, try someone new – they may have a new perspective. Advocate for yourself. Don’t be afraid to explain exactly how much of an impact your skin condition has on your day-to-day life. Provide evidence! Arm yourself with photos, a diary of everything you’ve tried and been through. Express that it’s also your mental health suffering, as well as the physical effects. Go to appointments with a list of questions or discussion points so you don’t forget anything in the moment. Be kind to yourself and use your support network as needed. https://www.britishskinfoundation.org.uk/blog/skin-disease-and-the-impact-on-family

Over the last 3+ decades I’ve been constantly experimenting with ways to ease my symptoms. Some of these have been total nonsense but when you’re suffering you’ll try almost anything. There’s so many variables involved with skin conditions that it can be really hard to tell sometimes what is actually helping. I appreciate to some of you this will be very old news. I’ll probably go into more detail in the future but for now I thought I’d rattle off a few to see if there’s anything you think is worth trying: Compression This one has been a life saver for me during the times when the itch has been mind bending. Just standard New Balance etc sport compression sleeves work for me. Especially at night when I’ve got no distractions, it also helps when I’m trying to focus on something for work. Air conditioning Blasting the aircon on the way to work in the middle of winter so that you turn up sniffling and shivering is not ideal but it was worth it to me to calm my face down slightly. I certainly believe that the cold can take the edge off of symptoms when things are red and angry. Diet and exercise Bit of an obvious one but there’s very little doubt in my mind that when I’m eating well it only helps my skin. The same with getting enough exercise. It’s so easy to feel completely broken down but doing all I can that’s within my control certainly helps my mental health. Mindfulness For the longest time I would just try to ignore and “march on” when I was struggling. I would see it as a battle and I had to keep my head down and keep moving forward. This often caused my mental health to become worse and worse. I now try to force myself to take 5 minutes to sit with it and observe how I’m feeling from an external perspective. It feels like before I was trying to bury my head in the sand and ignore it whereas now I acknowledge how I’m feeling and what I’m dealing with head on which feels much better psychologically. Keeping nails short The damage I can do from scratching when my nails aren’t cut short is shocking. Inversely when they are short it really takes a lot more conscious effort to do considerable damage. I cut my nails every week like clockwork and I’ve found this really helps. Routine It can often feel like the condition can dominate your life and having an extensive routine of medication and treatments can make this feel even more all consuming. It can become exhausting fitting in all the different medications etc and I’ve found the best way to reduce this impact on my life is to make it so routine/efficient that you can do it on autopilot. As an example I have a load of tablets I have to take, I take them at the same time every morning and have them all in a pillbox to make it as quick and easy as possible. I also have what I need dotted around the house exactly where I need it. Get it done and out the way as quickly and effortlessly as possible so it doesn’t become overwhelming and you don’t have to deal with any decision fatigue. Flexible working This is a big one but not a simple fix, it was something I was desperately working towards for 10 years. I’m in the hugely privileged position that I work from home and therefore have the luxury to not have to face the world if I don’t feel up to it. This rarely happens as it scares me getting into the cycle of not leaving the house but I know it’s there as an option if necessary, which is invaluable. This reassurance that I can hide away if I absolutely need to has had a profound effect on my mental health and I believe has paradoxically improved my skin. I know this isn’t an option for anyone but I do believe if you’re someone suffering you should consider it when choosing a career.

Large companies with the most reach are heavily tied down by regulation when it comes to promoting or even discussing treatments and medication. I therefore need to use my freedom in this sense to start directly discussing my own personal experiences with medications in case there’s anything you may not have heard of/tried. After a recent stretch of multiple flare ups I began my usual routine of desperately searching the internet for any kind of treatment which could offer a reprieve. It was then that I stumbled across a few Rosacea treatments, in particular Mirvaso. Over my lifetime I’ve been told by different specialists that I have Atopic Dermatitis, Eczema, Psoriasis, Rosacea etc so I was surprised that in my 31 years no one had ever offered me Mirvaso. Especially as it seems to be a fairly widely used medication with some people getting good results. It works by restricting the blood vessels in your face to allow less blood through thereby reducing redness. When I first tried it the results were miraculous, I hadn’t seen my face so clear in years. The most shocking thing was the speed in which it worked. Within half an hour my face went from this. To this It was staggering. I’ll admit along with the relief of my skin being clear and not being in pain one of my first thoughts was “WHY HAS NOONE SUGGESTED THIS TO ME BEFORE!”. Along with a nagging feeling that the answer for me is never this simple. I immediately jumped online and started reading anything and everything I could about Mirvaso. The same theme jumped through time and time again. That it’s an excellent tool in the toolbox for emergency use however it can wear off in the long term. Sure enough when used daily that’s exactly what it did for me. However, a bit of a side story; my Wife Donna is a very successful glass artist and was recently invited for an event as a guest artist to The Corning Museum of Glass in New York. You may be familiar with the museum if you’ve ever watched “Blown away” on Netflix which is essentially a Bake Off style show but with glass artists competing for a chance to win a place at the Corning Museum of Glass. It’s kind of like being a musician and being asked to play at Glastonbury! This was obviously a huge deal and I was so excited to share this moment/assist with the logistics of the day. Of course my skin decided to flare on the morning of the event, something which was incredibly daunting as I knew I would have to spend the day trying to make a good impression to all of Donna’s followers/important people at the museum. I also didn't want to put any more pressure on/distract Donna. Mirvaso significantly helped to calm my symptoms and enjoy what turned out to be an incredible day. I will forever be grateful for being able to be there and watch my Wife have her moment in the limelight. I can’t explain how surreal it was seeing a queue of people waiting to meet her and wanting photos/things signed! https://www.instagram.com/reel/C5Jh2B2Nm6O/?igsh=MWw0bXBjYjE0YzBycQ== So to summarise my experience with Mirvaso is that it wasn’t the cure but it is a very powerful short term tool, similar to prednisolone, Daktakort etc. While we wish these were all long term solutions, the psychological benefit of knowing we can fall back on these treatments when we so desperately need them is invaluable.

But with the hope that this will soon change All through my life I grew up with not only a lack of positive representation but exclusively negative representation. It felt like every villain/character who was intentionally designed to be disliked often looked a bit like me. This resulted in me fighting for my life to ignore and downplay my condition. To do all I could to not let anyone know or see who I really was. Which of course was impossible. I’d never really considered how much of an effect this had on me until recently. It’s just another contributing factor to the feeling of isolation growing up. I never saw people like me. I would have without a doubt benefitted from a role model to show me that it was possible to live a full and happy life. And that I didn’t need to believe all those around me who were making me feel worthless. This has started to change, representation is now a key societal issue and major corporations are getting involved. I’ve seen many people with vitiligo as an example involved in advertising campaigns. We’ve got to the stage where many people at least have a basic understanding of many conditions, such as autism, this needs to be the same with AD. Skin conditions affect around 900 million people worldwide, around 1 in 7, so it’s crucial society increases its level of understanding. Lack of education is what often causes these public humiliating moments where (often inadvertently) someone will comment or bring attention to what is a chronic condition. If people understand the depths that people are suffering both physically and psychologically hopefully they'll think twice before making the throwaway remark that cuts like a knife. This could create a world in which AD sufferers don’t have to spend their life walking around with their heads down, shoulders around their ears and anticipating the next comment. This is a big part of why this advocacy work has felt so liberating. I’m no longer hiding who I am or what I’m suffering with, I’m doing the opposite. As I’ve mentioned previously I’ve always struggled with thoughtlessness from others however bringing it to the forefront and making no attempt to dilute it has allowed others to see the reality. I’m very excited to be soon involved in helping Eczema Outreach Support who focus on helping children and young people along with their parents/carers. I’m certainly not the most exciting role model in the world and would love to be able to say I’m a fighter pilot or astronaut. I have however achieved things I am proud of; becoming a snowboarding instructor in Canada, married my beautiful wife, built and sold a business etc. To hear this from someone like me when I was younger would have been so beneficial. We should all continue to apply pressure and encourage businesses and governments to keep expanding representation as they are the ones who will ultimately move the needle.

(Spoiler alert) Other than if there’s another movie with Owen Wilson and a dog then I’m not watching it! I finally watched Wonder after years of pretending it didn’t exist as it felt far far too close to home. To briefly summarise for anyone that hasn’t seen it, it's the story of a boy (Auggie) with a facial disfigurement starting school with Julia Roberts and Owen wilson as Mum and Dad. It’s of course a net positive in terms of representation, education and encouraging a society with more empathy. Understandably being a hollywood movie there always has to be the inspiring happy ending, which in a way we all want to see but unfortunately often doesn’t reflect reality. Auggies home life felt very familiar, he’s surrounded by an incredibly warm, loving and supportive family. Having my tribe was vital for me growing up, from the tangible aspects of being taken to endless appointments etc to the more intangible feeling that my parents were fun, likeable, successful people and feeling proud to come from that family, both in relation to my close and extended family. I honestly cannot comprehend the strength of those living with a chronic visible condition who don’t have this support network. To have no one to make you feel that you are special and important must be incredibly difficult. The movie starts with the parents arguing as to whether Auggie should go to school or stay in homeschooling. I personally don’t believe there’s a right or wrong answer to this. There is certainly a benefit from the social aspect of school but I do believe there are instances (at least when I was growing up) where the cons significantly outweigh the pros. I think that spending all day every day somewhere that can strip you of all feelings of confidence and self worth can be something that is better to be avoided. It should be on a case by case basis but I do believe that the extremes of bullying and feelings of daily humiliation will have longer lasting negative consequences than missing out on the social skills that can be developed from school. I do think these social skills can be learnt in slightly more controlled environments (sports clubs etc). Again I’m not saying that every child with a visible condition should be homeschooled but I don't think anyone should see it as some sort of failure if homeschooling is the best option. I hope that nowadays kids are kinder and more empathetic as when I was there it was the law of the jungle. You did not show any element of weakness and you were constantly on alert to maintain your position and not become a target. Something some kids probably think about less than others didn’t but I was painfully aware I could be an easy target if I allowed myself to be. One of the characters in Wonder was Auggie’s friend Jack, at one point in the film Auggie hears him saying to the “popular kids” that if he looked like Auggie he would kill himself. Jack is then full of remorse and guilt when he realises that Auggie heard this. This resonated with me as there are a number of ways I acted in school that I’m ashamed of. I would certainly like to believe I was nowhere near the worst but in order to “maintain my position” and purely out of my own insecurity and cowardice there were times when I would put others down in an attempt to build myself up. I feel a lot of guilt and anger at myself for this. There’s also a part in the movie in which both Auggie and his sister experience a friend who all of a sudden does not want anything to do with them anymore. I experienced this a few times through my school life. I wasn’t cool to be around so after a while they would “upgrade” and move on. This is something I deeply struggled with and began cutting people out far too quickly so they didn't have the chance to do the same to me. I did like the way in which the film addressed how Auggie’s situation affected everyone around him too. This is certainly something everyone with/everyone around someone with chronic AD can relate to. I feel a sense of guilt and shame in how much hard work I must be. I remember my wife in her mid tw helping me apply bandages all over me and thinking this is not what a beautiful girl in her mid twenties should be spending her time doing. Through all the ups and downs Auggie is eventually accepted and celebrated by everyone and the movie ends with Auggie receiving a standing ovation by everyone in the school for his bravery. This is certainly not reality for so many and I would have preferred if they’d ended the movie on a positive note but without quite so much of a Hollywood ending. There is a lot of autism in my family and there was a BBC series a few years ago called “There She Goes” which is the true story of a family with a profoundly autistic daughter. The brutal reality of the situation is captured perfectly by this series and I think it’s something everyone should watch for a better understanding. While there’s still moments of positivity and triumph there’s no naivety in just how difficult life can be. Overall it’s an important step in the right direction but I believe the harsh realities could have been better represented to make those who are suffering feel more seen.