I’ve noticed, especially since the beginning of this year, when my twin brother received the dreaded diagnosis of lupus, that there’s a lot of ignorance about the disease – indeed, a few years ago I didn’t really know what it was either. It doesn’t get much coverage except amongst support groups, which makes it a big problem when you suffer from lupus and your friends and family don’t really have a clue. It’s a lot of work to repeatedly explain to people what lupus even is, let alone explain the effects on everyday life, and I think there’s a lot of room, and opportunity, to spread awareness of lupus, so that the next time you mention it to someone, the answer isn’t simply “what’s that?”
(I apologize in advance for the parts of the video where the audio doesn’t quite match up with the video!)
Since I’m posting up a video, I don’t want to simply regurgitate what’s in there, but I’ll write for those who don’t want to undertake the watching of a nearly twenty-minute video of me rambling without a plan (and I don’t blame you either!). May is Lupus Awareness Month. Maybe the order of the items I discussed in the video is a testament to just how much awareness is needed; I found I couldn’t be satisfied talking about my plans to support charities such as Lupus UK without going into what lupus is and what it does. Because Joe Average really doesn’t have a clue. And it’s not your fault if you don’t.
In fact, what we call ‘lupus’ is actually a specific form of it: Systemic lupus erythematosus, or SLE. (You can read about SLE in particular here: http://en.wikipedia.org/wiki/Systemic_lupus_erythematosus, or about the different types of lupus here: http://en.wikipedia.org/wiki/Lupus_erythematosus. These links are quite scientifically inclined, but the NHS site – http://www.nhs.uk/Conditions/Lupus/Pages/Introduction.aspx is a very good simple introduction for those who don’t understand it at all.) Put simply: with lupus, the immune system attacks the body’s healthy cells as if they were pathogens. It can affect every organ and tissue in the body, especially the kidneys. Most lupus-related deaths involve the kidneys failing. (Something I’ve kept in my mind; I view donating my kidney to my brother in the event that we’re a match as a very likely possibility.) The hallmark of the disease is essentially pain; it’s everyday and relentless, though many sufferers have flares and remission periods. Everyday activity can be affected; in the case of my brother, he can’t work, walk far, or even get of bed some days.
The worst thing about lupus, perhaps, is that there’s NO CURE. Once you’ve got lupus, you’ve got it for life. In fact, something I view as worse than that, is that it tends to progress throughout life; it gets worse as you age. In fact, someone who has had lupus for 20 years has a 1 in 4 chance of dying of it. My brother will have a 25% chance of dying by the time he’s in his forties, and that’s ignoring the risks and probabilities related to everything else: lifestyle, diet, habits, etc. The mortality risk is fivefold compared to ‘normal’ people when sufferers are in their 60s, and, according to the Wikipedia article, the leading cause of death is actually the consequences of corticosteroid therapy – the drugs used to help. It might not sound like a lot, but to know you have something inside you ravaging at your body every single day that will get a lot worse and eventually most likely kill you, well, that isn’t good news.
Some lupus sufferers, and indeed those suffering from other chronic and/or autoimmune conditions, have said they wish they had cancer instead. It’s not to be dismissive of the suffering and fatality of cancer, but to wistfully think about the chance of a cure. My brother had a leukaemia scare in the initial stages – it’s now been over eight years – and often he wonders why it couldn’t have just been leukaemia and not lupus. It’s a strong wish and something that really drives home how awful living with lupus can really be.
Luckily, there are online support groups that can really help lupus sufferers feel less alone: Lupus and Me (www.facebook.com/LupusAndMe), for example, welcomes people from all walks of life to share their stories and support each other. Suddenly you realize those pins and needles you’ve been getting aren’t just you; you’re not alone in all the little weird things you didn’t realize were typical of lupus. You can ask questions and not feel like an idiot. Often, family and friends need support too, and I’m pretty certain support groups like Lupus and Me are happy to help with any queries about being a good supporter and help for your friend. It’s not only the one with lupus who is affected.
All that and more are discussed in the video! Do feel free to ask any questions you may have, and I, or my brother, will be happy to answer them! May is Lupus Awareness Month, so become aware! Banish the days where you’ll ask “what’s lupus?” It affects around only 20 to 150 cases per 100000, but to any one sufferer, the stats almost don’t matter – their whole life is still affected regardless of how many are affected beside them. Remember the universality of the disease within the body, so that you don’t end up like the ignorant people who simply refuse to believe someone with lupus must be exaggerating when they list their symptoms and ailments. Remember there’s no cure. Remember the lifelong struggle. Remember lupus.
Visit the Lupus UK site here: http://www.lupusuk.org.uk
or leave any comments or questions below or in the comment section on YouTube.