I Have Lupus. Rare Disease Day

Today (February 28th) is Rare Disease Day.

Did you know that 1 in 17 people in the UK suffers from a rare disease? It’s a lot more common than you’d think!

I have systemic lupus erythematosus, known as SLE, or lupus. It’s an autoimmune disease.

What is Lupus?

People always ask me what lupus is, and if I’ll need a kidney transplant like Selena Gomez did.

Here are some basic facts about lupus. I am not a doctor, just a person who has lupus. My sources are linked at the end of this blog post for further reading.

• Lupus is an autoimmune disease, like rheumatoid arthritis or MS.
• My immune system is overactive, meaning it produces way too many antibodies. Essentially, my body thinks it’s fighting something bad like a virus (but it isn’t), and ends up attacking healthy cells. This leads to inflammatory reactions and other symptoms like fatigue and joint pain.
• Lupus symptoms appear in ‘flares‘. They can be triggered by anything from overexertion, stress, alcohol, certain foods, or if I’m around other people who have colds or the flu for example. Even sunlight can trigger a lupus flare. It’s so important to wear suncream, and stay out of direct sunlight if you have lupus. Wide-brimmed hats aren’t just for fashion!
• A characteristic trait of lupus is the ‘butterfly rash‘, that often appears across the nose and cheeks of many lupus patients. Not everyone with lupus gets the butterfly rashes though. I used to get them often, but not much any more.
• Any organ in the body can be affected by lupus, but the kidneys are the most well-known. Many people with lupus have kidney issues, and some need kidney transplants.
• Lupus is 9 times more common in women than men. It also disproportionally affects women of colour.
• There is no cure. It is a chronic disease. Managing lupus is all about managing symptoms. Some patients are given immunosuppressants or hydroxychloroquine (a medication for malaria) that has been shown to help symptoms. Physical therapy, pain relief, and self-care can really help.

Lupus symptoms can range from mild to severe. Symptoms need to be monitored, in case it progresses.

Unfortunately, having an autoimmune disease often leads to multiple autoimmune diseases. Many symptoms overlap with other conditions, making it difficult to diagnose.

Fun fact: ‘lupus’ is Latin for wolf.

The disease is called lupus because people thought the rashes looked like wolf bites!

This short animation from Lupus UK provides a great visual explanation:

My Lupus Diagnosis

It took years for my diagnosis. Did you know that most people wait around 4 years for any rare disease diagnosis?

You wouldn’t believe the number of blood tests I had. I had antibody results making it over 98% likely that I had this condition… yet still they were repeated again and again for a year until diagnosed.

I still need around 11 blood tests every six months to see what’s going on with my weird immune system.

I’m waiting for a brain scan, that might provide some answers! I’m hopeful.

How I Cope With Lupus

When I struggle with losing feeling in my hands, and the daily joint pain that makes me feel like an old lady, I try to think about how lucky I am.

My doctor is great, I have my wonderful group of friends, a wonderful Mum and the best little brothers in the world. I’m lucky enough to work at a beautiful historical site, in a lovely team.

I managed to walk up to the Athenian Acropolis, and the Temple of Zeus in Delphi… with a lot of pain and help from my Professor. But I did it.

Some days are worse than others. I won’t lie, sometimes I can’t walk. I rely on the people I live with to help me. Lupus is frustrating, and sometimes I just get so angry at my body for not working properly.

Coping as a Disabled Student

My tutor and the disability service at King’s College London have been amazing, offering so much support.

After a bad lupus flare caused a seizure, I transferred from a full-time Master’s course to part-time, which is the best decision I’ve ever made.

I had to slow down, and realise that life isn’t a race. Who cares if it takes me two years to finish my Master’s degree instead of one? I need to look after my health.

Awareness of conditions like lupus is so important. Rare diseases affect 3.5 million people in the UK. Many people are suffering, with no diagnosis. I’ve made a new category on this blog called wellbeing, where I’m going to write more about chronic illness, mental health and self-care.

You can also find me on The Mighty, a great online platform for mental illness and disability support. A customer at work actually told me about this website! She saw my ‘I have lupus’ pin, and recommended The Mighty. Never underestimate the kindness of strangers!

For more info and resources, check out the Rare Disease Day website. Statistics in this blog post are from Lupus UK and the NHS.

All the best, Emily. x

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