Alton Brown

My name is Alton Brown, and I am a proud LUPUS UK Ambassador, which excitingly for me, means I get to use my platform to support awareness raising of lupus as a chronic autoimmune disease, as well as support profile raising of the incredible work carried out by LUPUS UK.

As we come into Men’s Health Week 2023, this is a great opportunity to share a bit about my journey in the context of a day in the life of me and my occupation(s) and managing lupus, whilst speaking to the importance of men taking stock of their overall health, accessing the information, services and treatment needed to live healthy fulfilling lives.

I’ll start by sharing the fact that I’ve historically found it incredibly difficult to know where to start when it comes to describing who I am and what I do. A large part of that is because to date, I have had to wear a lot of different hats in my personal life and in my career with a fair bit of crossover. At the same time, I feel that my ability to wear different hats has also been a real driver for much of the success I’ve experienced in life. Now that I have that disclaimer out of the way, here I go, wish me luck.

So, I am:

• A 39-year-old, London-based, black British-Caribbean, husband of 10 years and father of two incredible young daughters.
• I am fiercely passionate about supporting and creating positive impact in the world and have consistently sought the opportunity to do this through both my profession and personal journey within the creative arts and the sports industry, where I specialise in youth engagement, and the creation of opportunities for children and young people through those platforms.
• I am a former Olympic pathway athlete within the sport of karate, having successfully represented two national teams (Team England and Team Jamaica) across a 22-year career, achieving multiple European, World and Pan American titles, whilst making history for Jamaica as the nation’s first medallist at a major continental championship.
• I am a trustee for Art Against Knives, an award-winning youth charity using creativity to enable young people to live their lives free from the impact of violence.
• I am an ambassador for FairFight Foundation, a Rotterdam based non-profit organisation empowering girls and women from challenging backgrounds across Zimbabwe, Zambia and India through the mental and physical benefits of martial arts training, while also strengthening local communities.
• And finally, I am the Director of Programmes at The Kids Network, a wonderful early intervention charity supporting primary aged pupils to live the lives they deserve through trauma informed, child-led mentoring delivered by volunteer community champions.
• And not to forget, I also have lupus.

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My journey with lupus started back in 2009, when I found myself experiencing symptoms such as swollen joints, muscle fatigue/burning, night sweats and the part I’ll never forget – crawling up the stairs at night just to get to the bathroom. As a karate fighter, I likened it at the time to feeling like I’d done 10 rounds with Mike Tyson, despite only having scratched the surface during a typical workout I’d have previously breezed right through. It took me almost two years to receive an actual diagnosis, but when it finally came it was a massive relief. The fact that I could name it, made it something I could finally begin to tackle on my terms. I was eventually prescribed Hydroxychloroquine and have typically taken a daily dose between then and now, with occasional periods of no medication supported by conversations with my rheumatologist. The support from LUPUS UK and the wealth of information and resources available have helped me to be able to more confidently discuss my illness, as well as point family members, colleagues and employers to a place where they can find more information to understand the illness, and therefore better understand me.

When I look back at my life with Lupus, I can’t help but feel incredibly proud of the journey I’ve been on. If you were to ask my friends to describe me, I’m pretty sure they’d refer to me as the guy who refuses to be bound by the challenges I face and who somehow always manages to find a way to achieve or get closer to his goals. Whether that is being a better engaged dad, winning a world medal or coaching a group of children within the community to chase their dreams, I believe we can all inspire and make a positive difference and we can absolutely use our personal journeys of health, challenge and our passions to do this.

Right now, a typical day in my life has to include the following:

• Dedicated family time – that speaks to me finally being at a stage in life where I can be the dad I want to be, without the demands of travelling the world as an athlete
• Meditation – to ease my anxieties and check in with my body and mind regularly
• Weight training, fitness and squash – which allows me to really feel alive and reminds me that anything is possible
• Purposeful work – which allows me to live out my desire to have a positive impact on others
• Coffee – because it takes me back to my happy place (relaxing in great chilled-out coffee shops)
• Great music, podcasts and audiobooks – to keep me inspired and finally
• Sci-fi on TV – on an evening when my day to day gets tough and I just need to get away

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My daily routine typically looks like this:

06:45    Wake up – Negotiate with my body about which parts are working well today – Set bath for my kids

07:00    Meditate for 10 mins using an app called Insight Timer – Glass of water with my lupus medication – Negotiate breakfast with the kids

08:20    School run either alone or alongside my wife (great music playing in the car sets them up nicely for the day. They’re currently loving a few Eurovision classics)

09:10    Short relaxing walk in the local park and opportunity to take in some green space (preferably with a coffee in hand)

09:30    Start work from home

13:00    Lunch at a local cafe (the owners laugh at me because I’m the guy that looks at the menu every time only to order the exact same meal – Jacket potato with tuna and cheese

14:00    Back to work

18:45    Visit to the local gym or squash court for a workout and stretch (4 times per week)

20:00    Dinner and the kid’s bedtime routine

21:30    Sci-fi, meditate and bed

Lupus, although challenging, has never held me back, but it has forced me to be even more resilient, to be creative in how I move, to listen and be more understanding of my own body. It has never stopped me chasing my dreams, in fact it has forced me to trust in my body even more, despite the moments that have felt like obstacles. The journey has made me stronger and better positioned to lift those around me. For that, I’m extremely grateful. My advice to men during this year’s Men’s Health Week who are looking for a diagnosis is to be patient, reach out to LUPUS UK for support and take confidence in the fact that once you get a diagnosis, you’re so much better positioned to take control of your journey. I look forward to hearing about all of the amazing things you achieve on the other side of your diagnosis and on your journeys.

Ricky Chota: breaking barriers as a lupus fighter

Hi, I am Ricky, and I’m proud to call myself a lupus fighter. Often overshadowed and forgotten, men with lupus face unique challenges in a disease that predominantly affects women. At 25, I was diagnosed with lupus, setting me on a path of resilience and determination to raise awareness and support for men like me.

Morning:

My career has primarily revolved around working at the National Union of Students (NUS) in Manchester. Thankfully, my employer understands the impact of Lupus on my daily life. Working from home has been a significant change, relieving the fatigue that commuting used to bring. Each morning, I begin my routine by taking approximately twenty-two tablets to manage my condition, waiting for my pain medications to take effect before proceeding with the day.

Being based at a desk, using a computer for my work, I have learned the importance of seeking additional support when needed. Access to Work has been a valuable resource, providing me with adapted equipment to make my work more manageable. I make sure to take regular screen breaks and move around frequently, as it helps alleviate my joint pains.

Lunch:

Lunchtime offers a chance to recharge physically and mentally. Working from home grants me the freedom to explore a variety of meal options beyond just sandwiches. From soup to jacket potatoes or pasta salad, the possibilities are endless. And when I am craving some comforting food, beans on toast is my all-time favourite.

Recognizing the impact of fatigue on my condition, I have adjusted my working hours to be shorter. This allows me to better manage my energy levels. In the afternoons, depending on how I am feeling, I might go swimming or hop on a treadmill at the gym (Manchester’s weather is rainy!). On tougher days, I find solace in relaxing activities like listening to music or podcasts.

Evening:

Evenings are dedicated to cooking dinner, catching up on TV shows, and most importantly, connecting with my loved ones. I am acutely aware of the stigma surrounding men’s mental health, especially within the South Asian community.

Fortunately, with the support network I have and accessible mental health services, I have overcome those barriers. Talking to others who share my lupus journey has been incredibly helpful, reminding me that I am not alone. I have found online support networks where men with lupus from around the world come together.

Looking back on my journey, I would offer two pieces of advice to my younger self. First, I would encourage reaching out to others who understand what it’s like to live with lupus, whether through online communities or local support groups. You can find details of your local group on LUPUS UK’s website. Second, I would emphasize the importance of trusting my body and listening to its signals. When pain or fatigue sets in, it is crucial to rest and not push myself beyond my limits, as I learned the hard way.

As a trustee at LUPUS UK, I am committed to advocating for men with Lupus. In the coming months, I will be actively working to better understand the needs of men in our Lupus community and exploring how LUPUS UK can provide more tailored support. Your suggestions are valuable, and I encourage you to get in touch through the LUPUS UK contact page.

My journey as a Lupus fighter inspires me to break down barriers and support one another, regardless of gender. Together with LUPUS UK, we can make a lasting impact, raise awareness, and build a stronger, more inclusive lupus community.

Julian Zbar

I’ve been a trustee at LUPUS UK for just over a year now, and with Men’s Health Week coming up, I was asked if I wanted to write a brief “day in the life” article for LUPUS UK – a description of a typical day as a working 33-year-old man with lupus. The reality is that it is impossible to define a typical day with lupus as the challenges that every day brings are unpredictable and varied.

Looking back over the past 4 weeks is illustrative of this. Over the past several days, I’ve been recovering from a kidney biopsy which took place 3 days ago. My ‘version of lupus’ manifests itself mainly through impairing kidney function, and a renal biopsy is the most accurate way to understand the state of my disease and to inform the next phase of treatment. Two weeks prior, I was recovering from a viral sinus infection which led to a 40-degree fever and a brief stint in A&E. Most of the month of May, however, was really positive, and I was feeling great. I was exercising 3-4 times a week and following a low-carb diet as I’m currently trying to lose weight in a self-imposed attempt to combat fatigue and reduce pressure on my joints. These unpredictable ups and downs are the norm, and remaining cool-headed in the difficult moments and enjoying the good moments is really important. 

As this unpredictability is the norm (does that make it predictable?) I can only focus on what I can control.

There are three things that I try to control on a daily basis. These are sleep, food, and exercise. Good sleep is crucial, and this can be hard to come by when taking prednisone, one of the most common drugs used to treat lupus. As such, factoring time for a much-needed mid-day rest is really just as important as a good night’s sleep. Eating a balanced diet with few processed foods, avoiding alcohol, and staying hydrated goes a long way for me, and I try to stay on top of that. I also believe that exercising is crucial. Exercising can mean a lot of things and depends on how I’m feeling on any given day.  Even in the worst bouts of lupus fatigue, I try to force at least a 20-30 minute walk each day. For me, moving my body is incredibly helpful. 

Overall, sleeping well, eating well, and exercising are vital in understanding my body and having a clear sense of how I’m feeling. Picking up small changes and recognizing early when something may be off is perhaps the most important thing one can do as a lupus patient. The various doctors I see for lupus are, of course, indispensable in fighting the disease, but I really do believe that, as the lupus patient, I myself am the “first line of defense”.

Lupus not only affects myself but also those around me. Canceling and rescheduling plans is the norm. Keeping friends, family, and colleagues informed on how I’m doing is fundamental. The social pressure can really build up, and managing this is really important to me.

All of this is to say that there is no standard routine with lupus, but there are things one can do to manage living with the disease on a day to day. I’ve learned to live with the condition. (I was diagnosed at the age of 12!). Whilst one has to face difficult moments both physically and emotionally, having lupus is not a barrier to living an overall happy and fulfilling life. I’m lucky to have an employer who understands my condition and collaborates with me in dealing with it. Although it was strange at first, I update them on my health situation a few times a month and this helps massively in also having a rewarding professional life. I love to cook, play guitar, spend time with friends, go to concerts and play sports – I still do all of these things!

Khiry Hopkins-Jones

My name is Khiry 32 years old and I have been volunteering with LUPUS UK since December 2022 spreading awareness and helping other people discuss their struggles with lupus like myself.

Morning:

My morning routine consists of me working on the book I am writing and having a healthy breakfast which would be porridge, fruits and a cup of tea. I will write posts on the kidney health leader website doing some moderating as well.  On other days when I don’t have the energy  I would watch a series or my favourite TV programmes in bed in the morning, I take my tablets which are omeprazole 20mg, folic acid 1.5mg, Bisoprolol 1.25mg, Prednisone 5mg, nifedipine 20mg sodium bicarbonate 500mg and adaport 1.5mg. Exercising is something I plan to get back into in the nit to distant future.

Lunch:

My lunch routine would be making myself something to eat which varies from a chicken and cheese wrap to pasta salad it just depends on the day and how I am feeling I try to eat as healthy as I can because everything you put if your body can impact on your health so a healthy body = healthy mind

Evening:

My evening routine would be to make dinner for when my wife comes home we will sit in the table and eat together and then watch a film or our favourite series that’s when I’m not watching football on the TV. On the weekends we may go to the cinema or for a meal out or I may go see my mum and siblings, on a Sunday I will go and watch my brothers play

Having lupus is not easy but my motto is you control the condition don’t let the condition control you, you are more than your lupus don’t think that just because you have it you can’t go onto live a normal life and still do and enjoy the things you like to do, what keeps me going is knowing I have a great support system and that’s why I continue every day despite suffering a lot of setbacks in the past, my advice for anyone looking for a diagnosis is you know your body best if you feel there is something not right go and see your doctor immediately don’t hesitate.