A fad is a random treatment or regiment that comes from out of nowhere and gains momentum quickly and without merit. Other people are so desperate for something to cling to that may be the “next big thing” to latch on to. The fad gets shared on other social media platforms and begins to trend. Most fizzle out rather quickly, but unfortunately, sometimes hundreds of people have already hopped on board and not everyone comes out unharmed in the end.
You may hear things like: cure, miracle, “everybody should be taking it”, “everyone is taking it”, “everyone is talking about it”…these are the kinds of keywords that should raise a red flag in your mind when it comes to HS treatment fads.
Here are some examples of fads that have come…and mostly gone in HS groups/forums:
Eating a lot of orange peels
Eating Vicks
Putting things up their bums (we won't even go there)
Drinking and/or injecting apple cider vinegar
Melting Zote soap and duct tape then tearing it off HS areas (exactly how it sounds)
Taking high amounts of Amino acid
Warriors Starving themselves
Taking supplements without medical supervision or advice:
VERY high amounts of zinc
VERY high amounts of vitamin D
Ingesting Turmeric
While this can help some people, it's also a huge trigger for many.
This is a natural blood thinner, it's not safe to ingest all the time, especially in the large amounts that these fads recommend.
There are many people who cannot take this for medical reasons, but aren’t even aware they should not be taking it.
Many people were hurt during this trend, and unfortunately it has resurfaced and never really gone away.
and L-Lysine…again
The L-Lysine fad has reemerged; it began around 2015 or 2016 and has risen again from the list of dead fads. This is not a "miracle". No, not "everybody should be taking it". It is not "completely safe," in fact, it can have adverse effects. Read our article here. No one who is currently taking L-Lysine (and especially those who are not taking L-Lysine) should be making these kinds of claims, in fact, these kinds of claims should be coming from the medical field after clinical trials done under SAFE circumstances with placebos in place or if prescribed as part of your personal treatment regiment by a trained professional or your physician, not by strangers.
Sharing your personal HS experience is one thing, but telling others to try a supplement, inject something into their bodies, eat weird things, or anything else that may sound out of the ordinary is not safe.
Be cautious of strangers saying:
"Just do it because several others are doing it, you should try it"
“I have nothing to lose”
“Others SAY it's helping them, so you should try it too!"
"People in stage 3 have seen a huge difference within 1 to 2 days"
People who claim to be in remission trying this or encouraging others to. If they’re in remission, why are they looking for something else to help with their HS? This should raise a question in your mind.
We're not saying don't try something new, we are asking you not to do it blindly. If you're going to be a "guinea pig" please do it under the care of medical professionals, researchers, and an actual expert, any other type of data collection is highly unethical and unsafe; this is exactly why clinical trials and studies are done. They eliminate all of the other possibilities and focus on one treatment method to see if there is credibility in that claim. This kind of validated research ensures you’re monitored and that everything is being logged and tracked properly. They do a full medical history intake to confirm that whatever drug or supplement under review does not have any contraindications or won’t interact with any other medication that you’re currently on. In most trials there are also placebo participants to test the efficacy.
To anyone seeing these fads, starting a fad, or considering participating in these fads, before jumping on the bandwagon keep in mind:
You do not know these people or anything about them; you can only go by what they tell you.
People could be on 1, 3 or 4 different regiments/treatments already and possibly just had an adjustment in their medications, could have been deficient in that supplement, or even have changed their diet, but are attributing the success to the fad.
What if their Humira dose was just increased last week, which could be the reason for their improvement?
Were they just put on an antibiotic as a new treatment method, so their flares are better controlled for the time being?
What if they're on multiple treatments or regiments but they think it’s all due to the new [insert fad here]?
There are so many moving pieces, no one knows because you don’t know the other person or their medical condition(s), so based on very little information, how do you know what is or isn’t working and why? Especially for severe HS, rarely does something work within a day or two.
Even if the fad worked or appeared to work for a hundred people (for example), that means absolutely nothing other than, it’s amazing that you found something that worked for you and we hope it continues to work for you and your personal HS. Blindly telling people to jump on the fad bandwagon is unsafe, especially with no knowledge of their personal HS, other possible health conditions, medications, how they will react, side effects (both short and long term), or contraindications for people specifically.
Be careful about diagnosing and treating others. Everyone’s HS is personal, no two of us are exactly the same. Just because people see improvement with something does not mean everyone should run out to try it and also tell everybody along the way. There are hundreds of products that are beneficial for our illness (person depending, of course).
There is a safe way and a NON-safe way to suggest possible options, especially to a community that latches on to and is willing to try just about anything for relief. We DO NOT support NON-safe. Please keep in mind that many are so hopeful when they learn about any potential option for their HS and this can also take a toll on one’s mental health.
Please, always remember safety first. As Patient Advocates, helping keep you safe is part of why we do this; we take safety very seriously. Our goal is to ensure that no one takes unnecessary risks with treatments; living with HS is hard enough, we don’t need to be reckless with recommendations.
If you ever have something you feel could help others that suffer, this would need to go through a proper product study trial. Please feel free to reach out to us so it can be done the safe, reliable and proper way.
HS Connect Testing/Sampling: When we test or sample a product(s) from a collaborating 'HS friendly product' company or entrepreneur to test the safety and efficacy with our own team. We would never ask or involve the entire community on those "project (s)," even though some of the products have been in the community for some time.
Proven and sincere experiences are not fads. Sincere suggestions are not fads, please know the difference.
Content in this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking treatment because of something you have read on this website.
Written by Denise Fixsen and Brindley Brooks
Edited by Brindley Brooks