One of many on a stranded ship, with no clear way out…
Around 4 million people in the UK have an autoimmune disorder. This is around 6% of the population – or one out of every 16 people. [1]
Researchers expect this figure to continue rising as each year passes by.
Especially as there are over 80 autoimmune diseases.
Systemic Lupus is one such condition. If you’re not sure what lupus is, do not worry; neither did I when I got diagnosed in February 2012.
Sorry… where’re my manners.
Hi, my name is Kieran.
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My Story
It’s close to 10 years now since my body began changing.
First came the joint pain… in hands, feet, elbows, knees, etc. It has to be work-related – is what I thought… I was a groundworker back then.
Then the appetite went missing. I went from being able to eat a horse (figuratively speaking). To not being able to finish my first course.
This was around the same time that my stomach started having issues. It must be a stomach bug – is what the doctor thought.
Yet, once I developed ‘Michelin-man’ legs, it was clear there was a more serious route. After a week or two, I decided to go to the hospital rather than my local doctor.
Within two days, I was laying down on a hospital bed looking at a long needle that makes a clicking noise. The doctor was explaining the procedure for my kidney biopsy.
The rules of the game were they have five attempts to take two samples of my kidney. Cool? It still makes my palms sweat to this day.
Five days later or so, I got my diagnosis at my hospital bedside…
“Kieran you have lupus nephritis. In other words, your kidneys are one step away from kidney failure. Plus you have two blood clots in your right leg.”
“Lupus is a disorder in which your immune system attacks your body. Nephritis means it damaged your kidneys.”
A couple of days later I got to leave the hospital with a bag full of medications and an ‘eat-less protein’ leaflet. As well as a follow-up appointment.
Since that day, I’ve been on my own. From finding out what lupus is, the potential causes, and promising treatments. If you feel the same way, this website is for you!
The Goal
The goal of this website is to be the go-to place for those looking to learn about lupus. In layman terms, this is the website that I wish I had access to in 2012.
Our healthcare systems are understaffed and overworked. This means that they cannot help us find why we now face life with lupus. But have no fear, this website will be your new best friend on your journey to health.
My Mission
To improve the lives of not only myself but every person living with lupus. I want to live a long, healthy, and happy life and I want others to as well.
I will research and report what science says about lupus. Providing up-to-date information and advice on how to distinguish it.
This is vital because as of now, there are no known cures. What’s more worrying is that incidences and prevalences have increased over the last 30 years. [2]
In the UK, the increases range between 3-9% [1]. Yet, this is a global epidemic. With the greatest increases seen in Israel, Netherlands, USA, and Sweden. [2]
So, you have to ask, “what’s changed in the last 30 years that could contribute to this?”
Is it advances in testing procedures, or is it today’s diet habits or lifestyle? My goal is to answer such questions. That is the purpose of this blog.
So why listen to me?
Reason #1: As mentioned, I’m in the same boat as you.
I take the same medications as you… experience the same pain. face the same challenges. No university degree can offer such credentials.
A few key facts about Lupus are [7]:
- It’s six times more common in Women
- The peak age of incidence was 50– 59 years.
- It is more common in people of African-Caribbean ethnicity
What’s ironic is that:
- I’m Male
- I got my diagnosis at the start of my twenties
- I’m White
If that surprises you. Imagine how baffled I was upon seeing these statistics. Besides, I know I’m not alone. This highlights how diverse the condition is.
The only fact that is important is that there is no cure. The current treatment, using anti-inflammatory, antimalarial, and immunosuppressive agents, is somewhat effective. But they possess the ability to create more damage than what was there before. [8]
This is one motive right there.
Reason #2: I’m an avid fitness and health advocate and have been since a teenager.
This is the most frustrating thought I had to come to terms with. I’ve always valued health above most things such as money; yet, I’m the one with a chronic condition.
In fact, I weighed 15½ stone before I became ill in 2012. As a regular gym rat, a good percentage was muscle. Yet, by the end of my hospital stay, I was weighing in at 12½ stone. This was after my oedema had gone, of course.
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Now I know I was valuing the wrong things. I put my physique and how active I was as a sign that I was healthy. Now I know the parts of the body we can’t see show how healthy we are.
Being ‘in shape’, ‘active’, or ‘fairly young does not mean you are healthy.
Reason #3: I’m actually quite qualified to speak on such matters.
My ‘real job’ is that of an Exercise Referral Coordinator. This involves running an exercise referral scheme within a gym. This is where health professions refer their patients to us for exercise.
My tasks include passing on lifestyle advice. Alongside designing training programs for people living with ailments. This can include autoimmune conditions.
This job gives me real-life examples of how the right advice can lead to a healthier you. Thus, a better life.
My formal qualifications include:
- BSc (Honours) degree in Applied Sport Science
- Higher National Diploma in Sport & Exercise Sciences
- Level 4 certifications in both Cardiac and Pulmonary rehab
I don’t have all the answers, but I’m trying to find them!
I don’t claim to have all the answers. Then again no one does, that’s the challenge of lupus.
But I have the fire in my belly to learn and then share this through my written work.
If you would like to join me on the journey to health then a big benefit will be to sign up for my newsletter. You can sign up below.
You’ll only get information on how to improve your health and have a better quality of life… Nothing annoying or unexpected!
If you’re ready to learn how to battle your lupus and live a better life, then enter your name and email address below and click “submit.”