Today is Rare Disease Day. Did you know that 1 in 17 people in the UK have a rare disease? It’s a lot more common than you’d think!
I have lupus, an autoimmune disease. It took YEARS to diagnose, but that’s average, with most people waiting around 4 years for any rare disease diagnosis. You wouldn’t believe the number of blood tests I had, with antibody results making it over 98% likely that I had this condition – yet still they were repeated and repeated for another year until diagnosed. (I still need around 11 blood tests every six months to see what’s going on with my weird immune system).
People always ask me what lupus (mine is systemic lupus erythematosus) is, and if I’ll need a kidney transplant like Selena Gomez did recently, so here’s some basic info:
– it’s an autoimmune disease like arthritis or MS (in fact, 75% of people with lupus have arthritis). My immune system produces way too many antibodies, like it’s fighting off a virus when it isn’t, and therefore attacks healthy cells, leading to inflammatory reactions and other symptoms.
– it comes & goes in flares, often triggered by things like when people I live with have the flu (I never get it because my immune system is so aggressive lol). Even stupid stuff like too much sunlight, alcohol, or not enough sleep can trigger a flare.
– any organ in the body can be affected, but kidneys are most likely (50% of people). Mine are fine at the moment!
– it’s 9 times more common in women than men because of hormones & stuff
– no-one knows what causes it (genetics to some extent), and it is not curable, but doctors are working on new treatments, such as with stem cells etc. At the moment it’s mostly about managing symptoms, e.g. physiotherapy for joint issues. For some reason, medication for malaria seems to help!
– 95% of lupus patients have a five-year survival rate today, compared to only 5% in the 1950s – medicine is improving alllllllll the time! Support the NHS yo
oh and ‘lupus’ is latin for wolf, because people thought the rashes used to look like wolf bites!
This short animation from Lupus UK is great:
When I struggle with losing feeling in my hands, daily joint pain that makes me feel like an old lady etc. I just think about how lucky I am in relation to people with no diagnosis or support. My Dr at Guys Hospital is great, I have my wonderful group of crazy friends (and Oliver), and the best Mum and brothers in the world. I managed to walk up to the Athenian Acropolis, and the Temple of Zeus in Delphi (albeit with a lot of pain and help from my lecturer). I’m lucky enough to work at the Tower of London, a beautiful historical site in a lovely front of house team. My tutor and the disability service at King’s College have been AMAZING in helping me. After a bad flare in January causing a seizure, I recently transferred from a full-time MA to part-time, which is the best decision I’ve ever made. Anddddd I’m getting my brain looked at in a few days at UCL hospital, which is pretty cool!
Awareness of conditions like this are so important, because rare diseases affect 3.5 million people in the UK, and many people are suffering with no diagnosis. I’ve made a new category on this blog called ‘health’, where I’m going to share more about chronic illness and mental health issues.
All the best,
*stats are from Lupus UK & this article: https://health.clevelandclinic.org/2017/04/5-surprising-facts-lupus-many-patients-dont-know/