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I’ve always been an empathetic person and someone who has enjoyed helping others. This is why the career pathway I chose as a young adult had to be social work, and in particular with children. During my working career I've experienced working with families, young people with various needs as well as a number of years as a hospital social worker. Becoming pregnant in my late twenties was a blessing, but not without a few hurdles. Following complications in the last part of my pregnancy Katrina was born prematurely at 33 weeks. This was my first experience being in hospital as a carer, but it was quite uneventful as Katrina returned home after 4 weeks. Balancing full time work with being a mum was a challenge, but I was determined to continue doing a job I enjoyed and found fulfilling. After 9 years Katrina’s brother Kaylan joined us, and this coincided with Katrina’s diagnosis of Lupus. His birth was a nice distraction at a time when life became the most challenging. Katrina’s diagnosis in 2008 began a period of frequent hospital stays to try and stabilise her condition, and then a referral to GOSH when the local hospital struggled with her care. it became a challenge to work full time even with the support of my sister who became a secondary carer. I didn’t always feel supported by my employers, and had to take a lot of unpaid leave and eventually reduced my working hours to manage my caring responsibilities and my own mental and physical health. Although there are laws protecting parents in this situation, if your absence impacts how the business functions then an employers flexibility around these entitlements can change.  I found that the legislation doesn’t always work in practice. When an opportunity arose to change direction, I took a break from work and focused on being a full time mum and carer. This brought me a lot of pleasure and a lot less guilt trying to maintain a balance between work and caring. But it also meant a big drop in income and greater outgoings and responsibilities. Carer’s are often advised not to give up work so as not to lose who you are within your caring role, for me the break from being an employee allowed me the opportunity to improve our quality of life as a family. However the past 10 years have brought many opportunities to grow and develop my skills and interest as well as my passions. I worked and managed a charity which has given me more flexibility with my time. I am also a school governor with particular interest in special educational needs, as well as taking other volunteer roles within the community and Local authority where I live. Katrina created the Katty’s Territory website in the hope of sharing her experience and  raising awareness of the importance of embracing your ‘normal’. Together in creating Katty’s Territory Empower & Support CIC, we are sharing  our lived experiences and creating a business resource to benefit young people and carers.

Being in a caring profession as a social worker and caring for a child/young person with a long term illness as a carer are two very different experiences and my professional experiences didn't really prepare me for the personal challenges to come. It has been a steep learning curve, one where I’ve had to be ready to change and adapt the way I think and care. From a caring nurturing mum and lead decision maker, to one who enables and empowers independence. My tips on being an effective carer are based my experiences of this ever evolving role, but also on how to look after yourself and equip yourself to do this role effectively. 1. Grieving, losses and changes It’s ok to grieve losses and changes. The world around us often makes us compare and think about what’s ‘normal’. It’s ok to grieve differences regarding societies ‘normal’ but adapting and accepting your ‘normal’ is invaluable to your families wellbeing and the marathon you're in Support from others in the same position can be encouraging, as empathy and experience can help. Most specialist teams in hospitals are multi disciplinary and work alongside other professions, providing help with transition, change and networking ( eg. mental health, physiotherapy, social services etc). 2. Taking care of yourself as a carer. Managing your mental health and being mindful of the mental health of your young person is a significant challenge for most carers. Being a carer can be isolating and filled with the pressures of balancing your needs with your child/young person. Depression and anxiety are as significant for a carer as they are for the young person managing their illness. Being aware of this and recognizing that you both might experience these emotions but for different reasons is key. Ensuring you are supported in your own right is important for your whole family's well being, and can significantly impact your capacity to care for your young person. Examples of support could be from; Family and friends; charitable organizations; professional therapeutic interventions. 3. Information is power It is always useful and empowering to find out information about your young persons illness, as this will help during appointments and claiming benefits/support. Be careful web searches are not always beneficial and can misleading, misrepresent and cause distress. Ask your GP, health specialist or reputable charities about approved sites or nhs based information sources. 4. Empower and represent your Young Person As an appointees it’s important to talk on behalf of our young people, but it’s equally important to allow them to talk and direct consultations as well. This applies to other aspects of their lives too, particularly in education. Talk to them frankly about what they want and support them in perhaps writing a diary to help them effectively represent their views , but you don’t always have to be a constant ‘carer’ . Don’t disable them enable them, facilitate and empower. 5. It’s ok to ask for help As parent carers we are incredibly self sufficient with an attitude that it’s easier to do it yourself, however you don’t always need to. There are a network of charities, professionals, social care, and family who can help ( Direct payments and short breaks). 6. Respite and practical support Taking a break from your caring role is a must. Making the time to regain your physical and emotional strength will help you cope and manage better. Admitting you need help doesn’t make you a bad carer, it just gives you a little more energy for other aspects of your life. . 7. Patient/carer participation Sharing experiences, taking part in research and advisory groups helps shape and improve services. Being part of these groups can be empowering and impactful, using your knowledge and experiences to benefit other service users As the ‘professional' patient/carer, your views are powerful and important. It may also highlight skills and confidence you never thought you had as well as meeting friends and like minded individuals.

I was invited to attend the RAREsummit 2023 and talk about the long lasting impact of having a rare disease. Despite not being able to attend in person I shared an audio recording of my speech, describing the different effects rare diseases can have on different stages of your life.

I was a part of Rare Youth Revolution's Genetics Project. I worked alongside Rare Youth Revolution to talk about different topics regarding genetics, which is important in understanding your rare disease. My topic was Genetic Inheritance, which was particularly important to me as I have a genetic predisposition to developing Lupus.

I was interviewed by RARE Youth Revolution about what it's like living with Lupus. It was a great opportunity to talk about Lupus with someone who has also lived with Lupus, which is something that doesn't happen very often for me.

These stages relate to my own experiences of being diagnosed, processing and living with Lupus. I believe it can be used as a guide for coping and managing other long term illnesses. 1. Symtoms Knowing what symptoms to look out for. Being educated and aware of different illnesses can help you better identify your symptoms. Don't be afraid to seek medical help. De-stigmatising having an illness is important so that you feel less self-conscious about sharing your symptoms. It allows you to be heard, believed and feel less judged. 2. Diagnosis Trying to get a diagnosis can be hard, so finally getting answers can be life changing. Finally knowing the reasons for your symptoms is a relief Fear of the unknown, not knowing much about your Illness can be scary Diagnosis helps to acknowledge you have an illness and enables you to access the right support(eg. Specialist organisations and support groups) No more being in denial because you know the reasons for your symptoms, a diagnosis can give you clarity. Genetic history - Knowing your family medical history can help understand your diagnosis. 3. Learning & Understanding Being properly educated by getting support from reliable sources Get Information from known and trusted medical professionals, and try not to be overwhelmed by internet searches with misinformation. Knowing and being aware of common hurdles (mental health challenges). Acknowledging these challenges are as important as being aware of the physical illness and its impact on you. 4. Treatment Finding the best and right treatment for you is important, and accepting it might have to change from time to time. As sometimes this can be discouraging, but this isn’t necessarily a bad thing as it often means improved health! Educating yourself about different medicines available and the effects. Following medical advice is important, but don’t be afraid to ask questions particularly if you're not happy with side effects that impact your quality of life. Although sometimes it can be overwhelming taking lots of different medications, the key to moving forward with your illness is taking your medication so it can improve your health. 5. Grief & Loss Having a long term illness can have a significant impact on on day to day life. At times it feels as if you've lost a part of yourself, giving yourself time to grieve over the big changes in your life is important. Acknowledge things that you’ve lost and can no longer do, but remember that some things are still achievable. Allow yourself to be sad without feeling guilty Be open to support during this process, and try not to be afraid to say how you really feel. 6. Adapting Finding a way to look at life from a new angle and perspective can help you accept changes that have occurred because of your illness. Learning to manage and cope in your own way. I've always used different forms of escapism (Music & Art) to manage. Understanding that even if you have a bad day it will get better. Finding new ways to do the things you thought you couldn’t, and using resources around that might help. You don’t have to do this alone, you’re not the only person having these experiences and maybe someone else’s experience/ support might help you. Accepting that it’s ok to be different. It's s easy to say but can be hard to do. 7. Accepting & Growing Accepting your illness, its impact on your life physically and mentally is key to adapting to the changes and making life manageable. It's important to find ways to continue to grow despite hurdles. It’s ok to seek advice to do this, but make sure you feel confident and that your voice is heard. Knowing that sometimes life will be difficult but knowing and believing you can find your own place and purpose is what I'm trying to advocate. My hope is to be able to continue to share these stages I’ve created and help guide as many people as I can through their own journey. I would also like for this to help other people who don’t have any experience with a long term illness better understand what we have to go through.

Recently I have rekindled my love for painting and drawing. It began in 2020 during quarantine when me and my family started colouring in to pass the time. I think we invested hundreds in colouring pens, pencils, paper and printing ink. More recently I began sketching and painting as a new hobby, which is something I did a lot during my childhood. In the past drawing has been difficult for me due to my Lupus, holding pens and pencils for long periods of time causes my finger to become painful and played a huge part of why I stoped drawing for a long time. But I've started to make use of different pencil grips and taking more frequent breaks to make it easier to enjoy my rekindled hobby. Painting has quickly become my favourite art form as I find holding a paintbrush less taxing on by hands, but also I feel like it allows me to be more creative not only with colours and design but also technique. Paint can be quite forgiving so mistakes can be easily corrected which is great for a perfectionist like me. I've tried both water colours and acrylic but I much prefer acrylic as I find it much more enjoyable to use (I truly don't understand watercolours well enough to use them). Most of my inspiration comes from images I see on Google or Pinterest but I mostly enjoy painting my family's cats. Overall painting has become a great way for me to escape and helps me manage my anxiety.

2021 was the year I discovered the amazing world of KPOP and other Korean music. (in no particular order) Love Killa -Monsta X Fancy - Twice Cry For Love -Baekyun Inception - Ateez Scared - P1Harmony Waves - Kang Daniel, Simon Dominic & Jamie Fever - Enhypen Tear Drop - SF9 Mafiosa - Nathy Peluso Poison - GOT7 Volvi - Adventura & Bad Bunny Lilac -IU Frost - TXT My Time - BTS Pose! - Yumdda & Simon Dominic Die For You - Justin Briber & Dominic Fike Lullaby - GOT7 Enchule -Rauw Alejandro Ateo - C.Tangana & Nathy Peluso Next Level - Aespa Top Artist - GOT7 Top Album - Friends That Break Your Heart

2020 was a difficult year for everyone, but with all the restrictions and lockdowns I was able to explore the genre of Latin music and I've become completely obsessed. (In no particular order.) Yo Perreo Sola - Bad Bunny No Me Conoce - Jhay Cortez, Bad Bunny J Balvin Se Vuelve Loca - CNCO TKN - Rosalia & Travis Scott Si Ella Sale - Bad Bunny Mala Santa - Becky G Soltera - Lunay Too Late - The Weeknd Medusa - Jhay Cortez , J Balvin & Angel AA Que Pena - Maluma & J Balvin Say so - Doja Cat Hablamos Mañana - Bad Bunny Back Door - Stray Kids Daechwita - Agust D Del Mar - Ozuna, Doja Cat & Sia Faith - The Weeknd El efecto - Rauw Alejandro & Chencho Corleone Ya Tu Sabes - CNCO Dont Jealous Me - Tekno, Lord Afrixana, Mr Eazi & Yemi Alade Get Me - Justin Briber & Kehlani Artist of The Year - Bad Bunny Album of The Year - After Hours

Lost in the fire - Gesaffelstien ft. The Weeknd Heartless - The Weeknd Con altura - Rosalía On My Way - Prettymuch Nowhere to Run - Ryan trey ft Bryson Tiller Boyfriend - Ariana Grande, Social House Barefoot in the Park - James Blake Rosalia Tru sh*t - Jacob Latimore, Trevor Jackson Tell you the Truth - Trevor Jackson Teeth - 5SOS Detention - Melanie Martinez Phone Numbers - Dominic Fyke Everything I wanted - Billie Ellish Me necesita - Prettymuch & CNCO Cheating on you - Charlie Puth Top Artist - Rosalia Top Album - Rough Drafts pt 2

Find out more about more about a new World Wide event to raise awareness awareness about the lives of young people living with rheumatic diseases. http://www.lupusuk.org.uk/word-day-2021/ https://www.pres.eu/activities/word-day/about-the-word-day.html #2019 #LUPUS #ADVOCACY #KATTY

In December I became a member of the McPin Foundation Young People Advisory Group (YPAG). This is an organisation that through research is raising the profile of young people in shaping mental health policies and services that directly effect them. In November I had the opportunity to go to The Houses of Parliament to attend the launch of Mcpin's 'Right people, Right Questions' about Young People Mental Health research. Click on the link to find out more http://mcpin.org/get-involved/youngpeoplemhq/ #2018 #ADVOCACY #KATTY #MCPINN