18th March 2021 is WOrld young Rheumatic Diseases Day (WORD Day), an annual event which will take place on the same date each year as an international awareness day for children and young adults living with rheumatic diseases such as lupus.
The key messages for this year are that children and young people get rheumatic diseases and that early intervention can impact health outcomes. The ultimate aim of WORD Day is to raise the awareness and knowledge level of parents, doctors, primary practitioners, teachers, and the general public to help early diagnoses, and a quick referral to specialised paediatric rheumatologists. We hope that awareness will have a ripple effect on all levels of practitioners who come in contact with these children, improving the level of treatment they receive and and their prognosis worldwide.
The event has been planned by ENCA (The European Network for Children with Arthritis) and PReS (The Paediatric Rheumatology European Association). In particular, WORD Day is targeted at doctors who are the first clinicians to come into contact with these patients (e.g. general paediatricians), parents, other health practitioners and educators.
For more information, please visit the WORD Day website at www.word-day.com
Karisse, 23, shares her experience of being diagnosed with lupus nephritis during the COVID-19 pandemic;
“I was diagnosed with SLE in September 2020. I had been experiencing horrid symptoms all summer and then one day I built up the courage to go to A&E. I had to go alone because of COVID-19 and that was a really big thing for me – I’m usually super anxious about this stuff and must always have someone with me – but I did it. A week later, I’m in a different kind of pain, so I go to the hospital again…after various tests, October 2020, I was diagnosed with lupus nephritis.
How was this happening to me, in the middle of a pandemic? I felt so… blank. All summer I was being pushed to the side by my GP, they were solely focused on coronavirus…but now, I’ve been diagnosed with this chronic autoimmune disease AND it was attacking my kidneys too? I didn’t know how to feel other than lonely and scared – no one understood properly.
My biggest struggle with my whole diagnosis was having to go through it alone – the initial diagnosis, the hospital admissions, the appointments…I know it was because of social distancing and COVID but I had never felt so alone in all my life, I was in a massive flare-up, didn’t understand this illness at all and I had to deal with it all alone. Almost a year later, it’s still the same, my family have never met any of my consultants or sat in on an appointment. I can’t wait for the day that they can, so I feel that little less “alone”. Things are so different right now, I cannot work because the drugs I am on suppress my immune system and increase my risk of infection massively, so if I didn’t feel lonely before, I sure do now.
Social media has helped me to cope massively this past year. I have been lucky enough to meet a group of people online who have the same illness as me so it has been very comforting to have people to talk to that just “get it”. It’s also allowed me to stay in touch with all of my work friends, distant friends and family and keep them up to date as I’ve had to shield for a lot of the time. I’m kind of excited to see what this year holds.“
Urvi, 22, has shared her experience of living with lupus during the pandemic and sadly losing her mother in May 2020;
“I was in Amsterdam studying abroad when we first heard about coronavirus. My mum, who also has lupus, took it really seriously and kept on asking me to fly home before it was too late. On March 7th 2020, I flew back to Heathrow for a weekend at home, not realising that would be my last week as an international student.
When the lockdown started, it was just me, my sister and my mum. We had to shield as my mum and I were both clinically extremely vulnerable. Lockdown was tough at times, not being able to see friends or go for walks made all the days merge into one and I lost a sense of structure to my life.
Unfortunately, my mum died on the 18th May from her ongoing struggles with her health complications, and since then, life has become extremely quiet. The pandemic has taken so many loved ones away and I fit into that unlucky category.
Living with lupus has meant I’ve still had to shield during the pandemic but this time, without my mum. I moved back to uni for my final year and really struggled with coping without my pandemic partner, but with the vaccines up and running, there’s now hope and I can finally see the end to this horrible tunnel.”
Lou has kindly shared her experiences of being a young person diagnosed with lupus and rheumatoid arthritis to help promote the event;
“My name is Lou and I am 19 years old. I was diagnosed with SLE and rheumatoid arthritis in 2015 at the age of 15. I had lots of symptoms going on at that time which included; hair loss, pain, fatigue and just generally feeling unwell. It took me five months to get my diagnosis. It was hard to adjust at 15 to my new life with lupus. I had real trouble with school, friends and family who just did not understand what I was going through. There were lots of appointments, blood tests and medications to get my head around. Once the appointments started to settle and the medication began working I was able to return to some normality in my life. There are many things I can do despite my conditions which I didn’t have to give up. I’ve learnt to take every opportunity that is given to me and to just try things. There are lots of things I have done that I wouldn’t have done if it weren’t for my diagnosis; I’ve got myself an amazing job with children, really doing something I love, which I only found out about because I started looking into different careers because of my conditions. I have also met some wonderful people with lupus who have had a positive impact on my life. I think it is important to share more awareness of SLE because lots of people don’t even know what it is. I knew nothing before I got diagnosed. If people had a better understanding it would make life so much easier and stress-free for everyone, especially young people. It is a lot to get your head around without also having to keep explaining yourself to others.”
Lilian’s daughter Katrina (whose story is featured further below) was diagnosed with juvenile-onset lupus. She has kindly shared her experiences;
“I’m Lilian Brooks and my daughter Katrina was diagnosed with juvenile-onset lupus when she was 9 years old; she’s now 19. Over the past decade it’s been great to see a growing awareness of this invisible rheumatic disease, as more people become aware of the impact and symptoms of this unpredictable and sometimes disabling illness. World Young Rheumatic Diseases Day is so important to raise further awareness to ensure young people have access to much needed treatment, resources, services, and choices
As a parent and carer of a young person with lupus it has been a challenge. This multi-system disease not only affected Katrina’s physical health but her mental health too, and changed her ‘normal life’. As a child of 9 the initial diagnosis and treatment was overwhelming for both of us, as I felt unknowledgeable, powerless and didn’t know what to expect. Frequent hospital appointments, a mixture of medication with names I couldn’t pronounce, hospital admission and unplanned visits to A&E, school absences and working full-time just added to the challenge! This was our busy life, just managing and coping, dependent on advice and guidance from the professionals around us. I definitely did not listen enough to Katrina, and our views as parent and child about what was best often didn’t always match.
As Katrina got older things had to change. After few years into this this journey I had to stop focusing on managing and controlling, and realise this was Katrina’s illness and it was happening to her; she needed greater input and a voice.
As as a parent and carer it’s important to be empowering and enabling. Initially when Katrina was a child I would make choices for her as the focus was to make her well, but as she became a teenager these needed to be Katrina’s decisions and choices. As hard as it is wanting to protect Katrina,the trials,tribulations and triumphs of living with lupus are Katrina’s to overcome…with a little help of course from a brilliant multi-disciplinary team and me!”
Katrina has also kindly shared her experiences of living with lupus over the past ten years;
“I had always been a happy-go-lucky child with an uneventful life, but at nine my life changed. In the space of a year I had gained weight, couldn’t go to school every day and was in so much pain I started to feel depressed. I didn’t understand a lot of what was happening to me and relied on the people around me knowing what was best.
Taking up to fifteen pills a day became and still is the norm, and always feeling tired is what I would like to change if I could. However living with this illness over the past ten years and acknowledging that lupus is for life has not stopped my determination to make my life as great as it can be.
I was homeschooled for a time to ensure I was able to continue learning, and would love to be self-employed so that I can be in better control of my career and be able to manage the ups and downs of lupus. I have created a website called Kattysterritory.com that shares my experiences, hopes and dreams, and my role as an advocate for young people facing the same challenges as me.
My lupus is stable at present, and there are days I feel like I can run a marathon (or maybe a half marathon), and days that I want to stay in bed because I’m tired. I’ve accepted this is ok and that my life is a little different to other young people my age.
Greater awareness through World Young Rheumatic Diseases Day and being part of this event is empowering and maybe it will help other young people with rheumatic disease feel less alone.”
Abbie has also shared her experiences of being diagnosed with lupus and the impact it has had on her life;
“Hello, I’m Abbie and I am 18 years old. At the age of 13 I was diagnosed with systemic lupus. Whilst the news was quite a shock, it didn’t seem to faze me too much, owing to the fact that I didn’t really understand how it was going to affect my life. I saw it as a temporary illness, despite being told repeatedly that it is chronic and there is currently no cure. It wasn’t until a year later, when I had lived with the effects of my illness for a longer period of time, that I finally realised that lupus was going to be sticking around for the foreseeable future.
I had never heard of systemic lupus, nor had any of my friends. Therefore, it has always been quite difficult for me to explain to others how my illness affects me, as generally people don’t have any prior knowledge of the disease. For me, it is very important to spread awareness of lupus and similar rheumatic conditions, because they are more prevalent than people first believe, yet get hardly any recognition from the media, especially adolescent/juvenile forms of the illnesses.
I consider myself very lucky, as I was diagnosed relatively quickly after initially becoming ill – only
eight weeks later – as opposed to the average six and a half years later. I had been on a school trip to Sorrento in Italy, and returned home unsurprisingly with sunburn across my face. However, rather than fading, the sunburn seemed to deepen in colour, and spread towards my forehead. Over the coming weeks, I began to experience nausea and headaches, aching joints, fevers, and crippling fatigue that meant I struggled to climb the stairs at home. I visited my GP, who told me that the prominent rash across my face was eczema and the array of symptoms I was describing was a viral infection. However, two days later, I was admitted to hospital with an angry purple rash across my face when my symptoms had worsened even further. My mum had researched my symptoms on the internet and found them to be synonymous with systemic lupus. A month later, after copious amounts of steroids, immunosuppressants and antibiotics, I was diagnosed with the disease.
Over five years later I am pretty near the state of health that I used to have before I was diagnosed. I would say that I am just a slightly more tired and achy version of my 12 year old self. However, with this comes bad days, where I feel exactly like I did five years ago, and carrying on as normal proves quite the challenge. Regardless, I have been able to carry on with my favourite hobbies, like dance and drama. These haven’t come without somewhat of a struggle, as now I have to think about my health first before anything else. This means that despite the fact I would like to be at my dance class every week, I sometimes cannot because I am too fatigued or need to catch up on schoolwork that I missed due to a hospital appointment. The key is prioritisation.
One thing I would definitely say that my lupus has helped me with is my academics. This sounds completely counterintuitive, as surely a chronic disease would make school-life a lot harder. One of the first things that was said to me when I first came back to school after being diagnosed was that my grades would inevitably go down and that was okay. As much as it may have been okay to let my grades slip whilst I was unwell, it was not okay to me. I enjoyed academics, and that is where I believe I thrived, so there was no way I was going to let my illness dictate this part of my life. Therefore, I had an enhanced motivation to prove my teachers wrong, and, whilst I wanted to maintain my grades, I found my grades actually went up. I truly believe that if I hadn’t been diagnosed with lupus, I would not be working at the level I am at now.
Furthermore, without being diagnosed with lupus, I would most definitely not be pursuing the career I have chosen: medicine. Through my stays in hospitals, consultations with health experts, research studies in hospitals and helping with projects, I have found a passion for a subject that I otherwise would not have. My love for human biology has developed as I have researched diseases similar to mine, which has led me to wider parts of medicine that I have never encountered before. The impact that many doctors have had on me in the last five years has inspired me to hopefully do the same for many other people. Whilst studying medicine will be a definite challenge, being diagnosed with lupus has given me a resilience that will aid me through my future studies, and inspire me to perhaps find ways to make the lives of people with rheumatic conditions easier.”