Decade of Lupus
Updated: Nov 8, 2021
The following article was published in Lupus Uk's News & Views magazine,Winter 2018 edition. I've posted it on my website because this particular article talks about my 10 milestone, my journey with Lupus.
"Hi its Katty again and I hope you’ve had a chance to visit kattysterritory.com, and continue to be part of my journey. Its been great that Lupus UK have allowed me to share some of my experiences with readers, and as a young person with Lupus I hope that others with JLSE (Juvenile onset Lupus) can relate to it.
This year marks my 10 year anniversary since being diagnosed with Lupus. It has been an unpredictable experience with highs and lows that have affected both my physical and mental health. At 9 years old it was a challenge to understand the hospital appointments, blood test, examinations and drastic weight gain due to steroids . I would love to say that over the past 10 years it has got easier ( I don’t think it does), but you learn to manage and try to be in control of the things you can.
Professor Beresford wrote a chapter on JSLE in ‘Lupus a guide for practioners’, and said that JLSE can not be managed the same as Lupus in adults. Mainly due to the length of time we have to manage the disease, but also because may of us have not yet established the ability and skills to deal with this challenging illness. This was certainly my initial experience as I remember sitting in an overwhelming adult clinic when I had flares and understanding very little. This was until my care became shared with GOSH, and people started asking me what I wanted. I remember being given liquid Naproxen for pain daily and how disgusting this was, until one day Dr Pilkington at GOSH gave me the option to try the tablet form. This simple option gave me a choice I didn’t know I had, and medicine taking became less stressful!
My life like many young people managing long term illnesses hasn’t always gone to plan, due to flares ups, chronic fatigue, missing significant periods from school and feeling disengaged from my friends who didn’t always understand this ‘invisible illness’. But what I have discovered about myself and seen in many other young people, is the drive to be significant and make a difference. Yes there are days when you want to remain in bed a feel sorry for yourself, that’s ok, because there are days when you can make a difference to your life and the lives of others…no matter how small.
Not every young persons journey is the same whether it is to pursue higher/ further education or to seek employment in some shape or form. But its so important not to compare yourself to others (easier said than done when the media constantly projects images and expectations), but like Lupus there are some commonalities but our reactions to some situations are unique to us!
Katty’s Territory promotes young people having a voice, choice, and “marking your territory”. In the transition from children to young adult services it has been important to become more involved. It also been important to remember the people around me that can also enable this to happen, and make the experience less of a challenge. My mum has always been there to support me through my journey with Lupus and the specialist nurses make a big difference. Nicola Daly a nurse at UCLH (University College London Hospital) has been with me from GOSH to UCLH adolescent to UCLH young adults services, she makes complex questions and task easier to understand, and provides a bit more space than in the doctor led clinics. Lupus UK and has been key to me and my mum in gaining information and support about a disease we knew so little about, and is now a platform to share experiences and gain information. Also gaining lifelong friends like Jane Dunnage (the previous Chair of Lupus UK) who selflessly shares her knowledge of experiences of Lupus, and who was the first to visit me and dispel the myths and discuss the facts of the illness.
I’m not sure what the future holds but I know being able to be an ambassador and advocate for Lupus and young people has its own rewards. Being part of the Patient Participation and Involvement programs locally and nationally, and working with other young people with a similar passion is a great start.