HS is Expensive - Avoid Falling for Product Scams
Have you ever encountered this scam? “Send $1 to this address along with a self-addressed, stamped envelope, and we’ll send you a guide on how your dollar can turn into thousands!” The trick, of course, is that you receive a letter telling you to post an ad with instructions indicating you should set up a post office box and send out letters to each person who responds to the ad, which you will then turn around and give them the same instructions that you were given. This has got to be the slowest and most painful way to get a dollar (or twelve).
If it's too good to be true, it probably is
If this made you roll your eyes, you may be a good candidate for spotting scams. The first rule is that if something seems to be too good to be true, it probably is. Always approach a product with skepticism, even well-known brands and concoctions.
For instance, I had a co-worker who was constantly trying to push green tea on me. He claimed that it “cured” about 80 different ailments. He very enthusiastically told me that everything supposedly good about it is posted on the web (and according to him, if it’s on the web, it’s the truth), and I should focus on that and it should be my main beverage.
I rattled off my list of issues including HS, which he had never heard of before, but "yes!" he said, of course, it would “cure” that! My co-worker had no idea how much was a healthy quantity, and green tea can’t cure 80 diseases, let me assure you. As of today’s date, there still is no cure for HS. Believe me, if I knew that green tea would take it on, I would be drinking it by the gallon starting this moment.
Always look up ingredients
The second rule is that you should look up the ingredients if they are available. Does the claim seem to match the ingredients? How much do you know about the ingredients? Can you pronounce them? Access to the internet allows us to spot check things like ingredient lists, and what seems like an intimidating name might end up being just the scientific name for aloe vera, or witch hazel.
If you don’t know what function(s) the ingredients perform or why they should be beneficial to you, do you shrug and think to yourself that they wouldn’t be in there if they weren’t needed? Hang on! HS leaves our skin pretty vulnerable and we wouldn’t want anything that would promote further and more dangerous infections such as cellulitis or sepsis. In the United States at least, we also tend to be the guinea pigs for all things medical and cosmetic, and the FDA only pulls products if they are rancid or cause death or deformities (and even then, it has to be extreme). We agree to put these things on and in us. The ingredient lists are just a bonus. So yes, absolutely, there are ingredients that can and will be harmful to us. It’s even easier to get away with questionable items when the products aren’t commercial.
Always check for legitimacy
The third rule, and I hate to be Captain Obvious here, is that if you are led to a product page and the person selling it is the same as the only person who left a product review on the web page, it’s probably not legitimate. Those of us who suffer from hidradenitis suppurativa sometimes are desperate for relief – so desperate that we will try nearly anything.
Recently I encountered a fellow patient who had purchased a product because she was promised that it would be a miracle cure. It didn’t have an ingredient list, and it basically turned out to be coconut oil and peppermint oil (we think). The product jar label was photoshopped for other ailments like psoriasis and rheumatoid arthritis, so countless others who were looking for relief also dipped into their precious budget for this cheap jar of oil. By my calculations, the profit was something around 1,500% markup. I linked to the other jars and pointed out the similarities. I’m surprised they sent jars to anyone at all, but if they hadn’t shipped any product, they would have been shut down faster.
Research, research, research!
I completely understand about needing and wanting relief from the symptoms of HS. I have done my fair share of alternating cursing and bargaining. But I think it’s a shame that fellow patients have put their hope into products that were never going to help.
The best way to protect yourself is to research, research, research. Asking fellow patients about certain items is okay (though some might be salespeople in disguise), but also read labels, review scientific journal publications – because they will tell you which treatments work and which won’t – and browse reviews, also with the understanding that those are peppered with salespeople as well. Don’t be in a hurry to part with your money.
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