The Good, the Weird, and the Just Plain Illegal
Blog post by Iris Carden
In my years writing Sometimes, it is Lupus, I was offered a number of things to review. They range from the absolute best lupus resource I’ve ever seen, down to a product that was possibly dangerous and definitely illegal.
The Illegal Import
Let me tell you about the memorable stuff. You want to hear about the illegal one first, don’t you? It was a pharmaceutical product, a tablet. Supposedly, it was the best mix of vitamins and other random stuff, for lupies ever, and would help reduce symptoms, prevent flares, grow feathers on your toenails, you know the spiel. (Every lupie in the world has heard the spiel at some time.) The product, of course, had no clinical evidence to back any of its claims. My initial response was, “You want me to encourage my readers to take a supplement, that might have interactions with the actual medicine they’re taking, without their doctors recommending it?”
It got worse. I, being the utterly suspicious person I am, checked the Therapeutic Goods Administration listing. This product wasn’t listed. So not only did the person trying to get me to promote his product want me to recommend an unproven, untested treatment, he wanted me to encourage my readers to illegally import an unlicensed pharmaceutical product into Australia. I don’t know what the jail term for that is, but I definitely declined the offer, strongly.
The Pointless Product
Moving on to the just plain confusing. This was a cosmetics distributer who asked if I would be interested in reviewing their products, and if so what. I replied that if they had anything for sensitive, rash-prone skin my readers and I would probably be interested. They sent me a product that was called something like “hair protector”.
I need to explain that I don’t use a lot of hair products. I have long hair. I keep it clean. I dry it with a towel. I don’t do much else to it because it falls out easily. I had never heard of “hair protector”. So I put this product in my hair, and wondered what it was supposed to do. It didn’t do anything I could tell. I wasn’t sure what it was supposed to protect my hair from. My hair wasn’t eaten by dragons, or attacked by aliens while the stuff was in it, so maybe it was working, I didn’t know.
After I wrote my very confused review, a reader enlightened me. “Hair protector” is leave-in conditioner. (Nowhere on the packaging, or the press release that came with the product did it say that.)
Now let’s move on to the actually great stuff.
The Great Read
Another author with a chronic illness, Duncan Cross, sent me his fabulous ebook League of Mortals. Duncan insisted it wasn’t autobiographical, but the protagonist, like Duncan himself, has Crohn’s Disease.
It’s a coming of age story with a chronic illness twist. There’s a lot of poo, a lot of laughs, (they do come together in a lot of toilet jokes) and just a great story of a teenaged boy discovering he’s got a chronic illness and learning to to live with this unexpected turn his life has taken.
The Really Useful Tech
Biophysicist Emmanuel Dumont and his team sent me their Shade wearable UV sensor. (The picture is the first generation one, which I still have. I see on their site they have a wrist one now.)
This connects to a phone app, and measures ultraviolet light exposure. I know not all lupies are sensitive to UV, but very many are. However, we all need some UV exposure for Vitamin D, and because no-one wants to spend their entire life in the dark.
This amazingly useful little product can help users set and stick to a safe UV limit. I’m all in favour of anything that helps lupies keep ourselves safe.
The Ultimate Reference
Lastly, here’s the product every lupie should have on the bookshelf.
Rheumatologist Dr Donald Thomas has produced the most useful guide to lupus I have ever seen.
Got a new symptom? It’s in the book. Been given a prescription for something you haven’t had before? It’s in the book. Worried or unsure about any aspect of your lupus in any way? It’s in the book. Your rheumatologist said something you didn’t understand? It’s in the book.