Scimitar Syndrome

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    Katy Baker

    Learning From the Positive Aspects of Living With Chronic Pain

    Did you know chronic pain affects approximately 1.5 billion people worldwide? And it impacts them differently from persistent yet manageable pain to debilitating symptoms needing multiple hospital admissions, regular medication or even no treatment available? Chronic pain is pain which usually lasts longer than six months, which often doesn’t just cause physical pain, but for many it affects them emotionally too. My chronic pain journey properly began in December 2018 when I experienced back pain. My family and I thought it was due to me doing too much at my trampolining training or my bed at my student house, but we did not think the cause was due to my rare disease scimitar syndrome. After seeing my GP, trying medication and starting physiotherapy, I had some x-rays because things were not improving, and it was impacting me more and more. After tests and consultations, the cause of my back pain was due to only one of my lungs working causing an oxygen imbalance and therefore a kyphosis curve of the spine. We went thinking it was more of an injury type problem which physiotherapy and exercises could improve to a chronic problem needing regular physiotherapy, daily exercises and trialing multiple medications to control the pain. This was something I really did not need on top of my already tough rare disease. But it has genuinely taught me so much, from my admiration for allied health professionals to not taking anything for granted. It may sound a bit cheesy that it has changed my perspective on things, but it really has. First, though there is no cure it has given me the motivation to help myself as much as possible. Of course when there are times where I feel low about my illness, this is hard, but having exercises to do myself and doing my best has really driven me to control my condition as much as possible. Having chronic pain has also changed my perspective on taking things for granted. I have always thought of myself as a grateful person, but having chronic pain has really helped me realize that enjoying the simpler things in life is so important. It has helped me to be thankful for what I have been able to do each day, for example, being able to go for a walk in the fresh air one day or being able to carry out my studies sitting for long periods one day really is something to treasure for me. It is so important to enjoy the good days when they are here because with a lot of chronic pain and chronic illness, symptoms and flare-ups can creep up on you. Although chronic pain can be incredibly difficult to deal with, there are positive aspects of it, and I believe it is important to acknowledge those moments to help your emotional wellbeing. For me, the best part is support from allied health professionals who do not get enough admiration. Without my physiotherapist, things would be very different for me. They work tirelessly to treat the person as a whole while going above and beyond to research about a person’s medical history. I honestly cannot thank my physiotherapist enough and without my chronic pain, I would not be able to get an insight on the work these allied health professionals do to help people’s quality of life. The other best part of my chronic pain is educating others about invisible illness and chronic pain. I can see the world and definitely the world of illness from a different perspective than others, to raise awareness and advocate for this community so our voices are heard. I really do know that with chronic pain it isn’t that easy to feel thankful and acknowledge the good days; everyone has hard days and low moments and that is totally OK. If you are experiencing more low or anxious moments than good days, it is also OK to reach out for help. Chronic pain and chronic illness are tough enough.

    Katy Baker

    On Creating My Own Rare Disease Podcast

    Did you know the World Health Organization estimates that approximately 1 in 15 people worldwide live with a rare disease? That actually means that having a rare disease isn’t uncommon, so why are a lot of rare diseases so unknown? In the midst of the COVID-19 pandemic I decided to make it my mission to educate others, raise awareness about different health conditions and give my guests a platform to share their stories and explain how illness can affect different elements of your life, not just physically. Don’t get me wrong, I wasn’t the first person in the world to come up with this idea. But from living in the UK and not finding another rare disease podcast based in the UK, I wanted to create a podcast so people here have a chance to share their experiences from the health care world. To be honest, another reason I decided that August 2020 was the right time for me to create my podcast was because I became fed up with health professionals not understanding my rare disease, scimitar syndrome. Of course I get that professionals can’t know about every single condition out there, but the way they react or ask rare disease patients needs to be acknowledged. Another reason I decided to start my podcast was because I have been involved with the InvisiYouth Charity for a number of years. From recent conversations with other members of the charity, we found that illness can impact so much more than just causing physical symptoms. When you are a young person trying to navigate the world of employment, first relationships, studying, transition and so much more (although it can be at any age), these are barriers and challenges that so many don’t realize there are. I am not glad that so many people with illness struggle with these challenges, but I have used this to motivate me to make my podcast as good as it can possibly be. My motto for this podcast is “if it helps one person, I am genuinely happy with that,” and it will always be the same. Since I first tweeted about it in early August, I had some many great responses from people wanting to be featured on my podcast from all over the world including UK, USA and India. However I had to learn every single bit about creating a podcast. I had no idea how to edit, I had to research the site to post each episode on which is then distributed on to Apple Podcasts, Spotify and several others and I had to do the work to find out that recording episodes on Zoom was a good idea because it has good sound quality. It has taken a while but I love every part of it. I have a Twitter page to promote each episode, and to be part of the rare disease community and educate others about rare disease. I am in awe of all of the guests I have had so far, sharing their stories so openly and raising awareness about such important topics that affect so many. I am so proud to say that I am nearly close to 1,000 listeners (which doesn’t sound like a lot to some, but for me I am so pleased). Not that it is about numbers, but of course more numbers means more awareness and education! If you would like to listen to my podcast you can search for “My Rare Disease” on Apple Podcasts or Spotify. You can also keep up to date with the latest information and episodes on my Twitter page @myraredisease.

    Katy Baker

    Dealing With Overcrowded Hospitals and Chronic Illness

    Entering the emergency room means you are feeling vulnerable and need some help. People are there for so many different reasons: those in physical pain, or needing life-saving treatment, people visiting family members in their time of need, experiencing mental health crises and so much more. When I was there last week, it really put everything into perspective and showed how everyone is fighting a battle you know nothing about. Last week I entered my local emergency room department in severe pain. I was waiting for tests and to see a doctor all night. I saw many patients and their families helping one another, but most of all how overstretched our healthcare services are. Each room was split in to two to get more patients in, each machine was passed around as quickly as possible, nurses were being sent down from different departments to help with the workload and waiting times were longer than usual. That night, some people were at the emergency room for the first time, some through car accidents and others through chronic illness. This was an environment people with chronic illness know all too well — too many patients, too few beds. I often feel that people with chronic illness used to the hospital surroundings have a sixth sense; they know when someone is struggling, but also are more willing to wait because they know the time it takes to care for patients. We see hospitals are overcrowded with too many patients and too little patience. Here are some other common chronic illness experiences: Figuring out your own symptoms with a chronic illness – are they new symptoms or are they symptoms of your chronic illness? Are they caused by sudden illness or are they part of your illness as you get older? Should I be worried, or should I leave it a few days and visit my physician instead? Chronic illness can trigger many emotions. Dealing with your chronic illness day in day out can cause many different emotions, not just with the actual illness but also the environment you’re in, and other aspects of it such as guilt and loneliness. Being in the hospital just makes you overthink everything more. It takes effort to manage a chronic illness – often patients who go into the hospital come out cured or have simple treatment lined up. However, there are some who have to learn how to adapt to managing an illness which can take over their whole life. We are constantly surrounded by doctors and nurses, not necessarily in the hospital but always in our thoughts. The time we have to take off work for appointments, processing medical results, not knowing what to do when we feel unwell and most of all not wanting to take up people’s time, whether with family, friends or medical professionals. Please know that when we end up in the hospital, we appreciate that you are busy. But we are sick of worrying people anyway so when we turn up to see you, we do need your help. Next time you find yourself or a family member in the emergency room, take a moment to look at the other patients there sharing similar thoughts with you – the unknown. People may be facing different health challenges, but we are all looking for that one common goal: to feel better and be back on to the right track. Please be patient because we are all wanting the time and effort of healthcare professionals. It takes time for doctors and nurses to do our tests, get our results and sit down with each of us to tell us what is going on. They spend their time being empathetic, compassionate and reassuring, telling us it will all be OK. I try not to judge others, as you never know what they are going through.

    Katy Baker

    Visiting the Emergency Room With a Rare Disease

    The saying “you look well” is usually a lovely comment to hear. But when you hear it time and time again when you don’t actually feel well, it can get you down. I don’t just hear it from friends and colleagues, I also hear it from doctors and nurses when I am feeling incredibly vulnerable. Not so long ago, I entered my local emergency department with severe back pain. I knew something was wrong because I couldn’t sit down and pain was radiating to my chest. I explained to the triage nurse I recently had a chest infection that lingered. Due to my long-term condition, scimitar syndrome, I am vaccinated against flu and pneumonia. So for me to get a chest infection is rare. However, when I tried to explain this to the nurse, she said “you can’t just say you never get chest infections; everyone gets them.” I felt shut down and like I couldn’t get my message across. What I was trying to say was, “I don’t really get chest infections, so I feel like this could develop something further.” There I was again, in the emergency department looking fine, by myself and just wanting this to be over. All I wanted to do was get my message across and feel better, but I felt like I was being stereotyped and that people thought I was exaggerating how I was feeling — when in fact I was scared. After some tests, I was told the doctor who was going to see me knew my condition and had seen me before. This put me at ease, because I thought he could compare today’s results with old ones. However, it turns out the doctor didn’t know anything about me. All I wanted was someone to be able to empathize, to talk to me like they believed me or to just reassure me that things will be OK. I walked in to the emergency room because I was scared and vulnerable and because yet again, there isn’t enough information about my rare disease for me to know what to do. To people who were there in emergency room as patients, I might have “looked” OK. You might think I was seen before you unfairly — but please know I was struggling too. To the doctor in ambulatory care, thank you for listening, for asking me questions and for taking in what I was saying. Just because we have a condition you have never heard of,  it is still very real. Have you experienced something similar? Please share your story in the comments:

    Katy Baker

    The Challenges of Working Full-Time With Invisible Illness

    In March of this year I was elected into an exciting role, Vice President of Welfare at my students’ union. It wasn’t just a role I thought would suit me, but it was also an environment I had been really involved with throughout my undergraduate studies, so what better way to give something back? I was ready to represent students and make changes for the better. My role began in June. I had a month of training, and was around people who had supported me over the last few years. All was going well. What I hadn’t thought of, however, was how having a full-time job would impact my health. About a month ago, I become a bit “chesty” in my voice, and people at work started to notice I didn’t sound well. However, I didn’t feel unwell so I just carried on. This was mistake number one. It wasn’t going away and I started to get breathless, but I just thought it was due to my long-term back pain – mistake number two. I chose to rationalize all of these new symptoms, and didn’t think twice about working. However, three weeks ago I went to the hospital because I was in so much pain with my back. I couldn’t sit down and was also experiencing chest pain. After tests and some deliberation, the doctor said I have a chest infection. I was given antibiotics. Due to the fact that I couldn’t remember the last time I had a chest infection, I kept on working. This was mistake number three. I thought it would just clear up, but now I need more tests because things just aren’t going away. Most of us would assume that health is a priority — and of course it is — but when you are battling with work, it is hard to know what to do. I learned very quickly that having a rare, invisible disease makes it hard to discuss my health because I “look” fine on the outside. It could easily seem to others that I am exaggerating or even lying. I learned that society’s views need to change and employers need further education to understand how to talk to and support those with invisible illness. Invisible illness deserves the same amount of care, attention and respect as any other condition. Those mistakes I mentioned, they are mistakes that I now understand, but didn’t realize I had made at the time. They are mistakes that would have been rectified if I had a few days off and some proper rest, but the anxiety about telling my employer was overwhelming, and I honestly felt scared to bring it up. Situations like these really highlight why we all need further education about rare diseases  and disability, because being able to talk openly with employers isn’t just necessary for our mental health, it means everything for our physical health as well. Has your rare condition impacted your work life? Let us know in the comments below.

    Katy Baker

    Scimitar Syndrome: Challenges of Having an Invisible Illness

    I am just going to say it how it is: invisible illnesses are so annoying! It is nice to appear “healthy,” but having an invisible illness means that people don’t instantly know that you have an illness or disability. I recently sat down with a friend and started talking about my illness, scimitar syndrome. After explaining how it works and what happens when I go to hospital, etc., my friend was really surprised. She said that because there are not visible signs that I am unwell, she often forgets I go through all this. This really made me think. She is right — I feel my condition every day but it can often be difficult for my friends to remember that I have a burden on me and it will never go away. What some people don’t realize or might often forget is that sometimes, our illness can waste our days. Most of the actions I take and nearly everything I do is affected by this condition I have. While I might seem OK when at my university, I am actually trying so hard to be OK, keep up to speed with my friends and get as much out of my lectures as possible. To my friends, my illness may not appear to always be affecting me but believe me, it is — it really is. It would be nice for me to be able to forget about it just as my friends do sometimes. My disease may be invisible but the symptoms and side effects I get from it are horrible. The Raynaud’s episodes, the back pain from scoliosis, the severe migraines and day-to-day breathlessness make my invisible illness very real. Never judge anyone from what you can see — you could turn out to be very wrong. My disease may be invisible to you, but it’s never invisible to me. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.

    Katy Baker

    Scimitar Syndrome: Woman Thanks Her Heart and Lungs for Motivation

    Dear Heart and Lungs, I would just like to thank you. I know “thank you” isn’t what you were expecting to hear, but I honestly do mean it in a positive way. It wasn’t the best start in life, but even though I was eight weeks premature, you were ready to fight even before you were meant to. Thank you for being prepared because not many people were! If you weren’t ready when I was born, it could have been a lot worse, but luckily you have been on my side every step of the way, even if there have been challenges. That big chest infection in June 1997 — I suppose that was actually quite a good thing. I mean, I know it was hard for the lungs (or lung!) to keep working, but looking back at it now, I think you truly saved me. Imagine if I didn’t have the chest infection, Scimitar syndrome might not have actually been diagnosed, and I may have not known for a long time what was going on. That would have been extremely scary. Don’t get me wrong, the chest infection was a lot of hassle for my mom and dad and all of the doctors involved, and it would be a whole lot easier if I didn’t have Scimitar syndrome. But as I do have the condition, thank you for bringing it to our attention. I’m not going to lie: Having one functioning lung can be rather annoying at times, but hey, it’s better to have one lung rather than nothing. But on a serious note, sport is something I do enjoy. I just have to work a little bit harder and be more aware of how I’m feeling. I ran cross-country at school, and that was honestly one of the hardest things I did in life. Then in July 2013, I went to Morocco to climb up the Rif Mountains (yes, I really did!) with some people from my secondary school. It was an amazing experience, and I would like to thank you, heart and lungs, for allowing me to do this. I was literally on the same level as the clouds, and it’s something I will never forget. This really was the hardest thing I have done, but I was so proud after I achieved it. You did a good job during those two weeks; I know fighting the heat isn’t something you like to do, too. You have given me the motivation I have today. I’m involved in some health campaigns and had some great opportunities I would have never imagined if you actually behaved yourselves. So in that respect, thank you! After my degree, I want to become a hospital play therapist, since I’ve learned so much from you, my doctors and others around me. Thank you for teaching me. You have kept me going even if I did enter the world early, but that hasn’t stopped me! We want to hear your story. Become a Mighty contributor here .

    Katy Baker

    Scimitar Syndrome: Trampolining Is More Than Just a Sport to Me

    The phrase “gift of life” is usually reserved for someone who had a transplant and got a special second chance in life. Even though I haven’t had a transplant, I feel I’ve been given a gift in life: To live my life to the fullest as a way thank my doctors, family and friends for the life I have today. Taking life for granted isn’t an option for me. I’ve been in and out of the hospital after I was diagnosed with an extremely rare heart and lung condition at 3 months old. I know what it’s like to not be able control your illness and, therefore, not be able to control how you feel on a daily basis. I’m on my university’s trampolining team, and I absolutely love it. Trampolining can take its toll on the average human body, and with only one functioning lung, it’s extremely difficult. Despite finding it more difficult than others and needing help from my teammates, there was no way I wasn’t going to compete and make the most of the life I have been given. Trampolining means so much to me — more than others can probably imagine. I know it sounds silly. I bounce on a trampoline, do a routine and then I’m done. But to me, I got through it all and my body allowed me to do what I enjoy. When I think back on all the medical tests, hospital consultations and my diagnosis, I remember why I’ve pushed myself to achieve. A sense of emotion overwhelms me when I get off the trampoline and see my teammates. I feel so proud I’ve been able to be included in these types of events and to show my illness hasn’t taken over my life. I haven’t only achieved this for myself, I’ve also done this for others who face challenges and for other people in my life: the two other girls I know who have Scimitar syndrome, my family, the friends who have helped me through hard times and my amazing doctors and nurses who looked after me and literally saved my life. By trampolining and living my life to the fullest, this is my way of saying thank you. Do not let your illness take over your life. You should have the same opportunities just like everyone else. We want to hear your story. Become a Mighty contributor here .

    Katy Baker

    Scimitar Syndrome: Why Doctors Need to Reassure Rare Disease Patients

    Dear medical professionals, As quoted by Rare Disease UK, 7 percent of the general population will have a rare disease in their lifetime. This may not sound like a big percentage, but this 7 percent consists of vulnerable people who may need lots of care and treatment in the hospital. But while the hospital may seem like the best place for these rare disease patients, it can actually be the place where people realize how incredibly difficult it is to have a rare disease. Dear medical professionals, Over the past year, I have found it increasingly difficult to tell people about the illness I have. I do not mind friends and other non-medical professionals asking me to explain what it is, but in the past year, I have had one nurse and two paramedics look at me very confused when I told them I have scimitar syndrome. No, I do not want them to lie and pretend they know what it is, but I want to be reassured they are willing to find out the necessary information and able to understand it better when I explain it. After all, they are the medical professionals, not me. When two paramedics came out to me earlier this year, they started to Google my condition and asked me how to pronounce it and how to spell it.  This did not leave me feeling reassured at all. Having a rare disease can make people feel people extremely vulnerable and isolated, so the last thing we need are for medical professionals to not understand us. We put our trust in you and, at times, we put our lives into your hands. Reassurance at these worrying times is exactly what we need. Dear medical professionals, I am not asking for you to know everything about every existing condition, but I do ask that you try and understand as much as possible and reassure us that you are willing to find out all of the relevant, necessary information. We want to hear your story. Become a Mighty contributor here. Image via Thinkstock.