HS on the go: What is in your kit?
Do you have an HS kit? If you are like me, you might have a kit for your office, car, and stashed at a friend’s house. My kits often includes a full change of clothes and an HS first aid kit. Let us know in the comments what is in your kit!
My HS first aid kit includes:
Bandaging: assortments of Equate bandages, Tegaderm, Nexcare blue tape, menstrual pads and liners, petroleum jelly packets, Q-tips, nonstick gauze pads, and scissors.
Topical Pain Relief: lidocaine back pain patches and roll on, ThermaCare patches, and Voltaren Gel
Clean Up: alcohol wipes, paper towels, spritz bottle with Hibiclens, and wet wipes
Heather Koon
Hi. I have been battling with HS for almost 2 years now, taking medication for over a year. I have really been struggling lately and have been looking for a support system/group. I think one of the worst parts of this condition is feeling like you are all alone dealing with this. I live in the Western North Carolina area. Do you know of any online or in person resources?
aldresselhaus@hopeforhs.org
Hi Heather! We currently only have online meetings due to COVID-19. Check out our online support group page for details.
ashlie
i live in texas but im having a hard time with it as well
aldresselhaus@hopeforhs.org
I know Texas is huge and these clinics might not be close to you, but there are two clinics listed on the HS Foundation website here: https://www.hs-foundation.org/hs-specialty-clinics.
Amy
Hi I didn’t know I had HS until the last couple of months… I’ve had it for many years now and I thought I was just gross. Anyway, all those years ago I had to stop wearing deodorant because I thought it was the cause. Is there. Deodorant you recommend or one you would include in the kit as well?
aldresselhaus@hopeforhs.org
I’m a fan of Lume. Or, I just don’t wear any at all. You could try the ones that spray on to avoid rubbing the area (if that is a problem for you).
Rhonda U.S.P.S
Where can you find Lume ?
aldresselhaus@hopeforhs.org
You have to go direct to their site. https://lumedeodorant.com/
Meriah Holtzclaw
Lume is amazing!
J
Lume commercials say it doesnt cause itching but i didnt itch before i triedLume. Wont ever use it anymore.
Christina M Hart
I use crystal, spritz deodorant. I buy it on Amazon. It’s free of all the crap that clogs your pores.
Felisa
Hi… I have never thought to make a kit like this… You have changed my life. Thank you!
aldresselhaus@hopeforhs.org
Glad to help!
Jill
Ditto
Gigi
I think this kit is amazing, however, I really don’t know how all of it is used could you kind of explain how you use some of the items you have. I know what the bandages are for of course and that some of the cleaning items are used for cleaning the area. But some of the other things I’m a little curious as to how they are used to treat to manage your HS. I Hope this isn’t a stupid question but I’m kind of struggling with what to use as well. I have the tegaderm and I purchased some curaid non-stick pads but I’m having a little trouble because I need to have it on my inner thighs it doesn’t really stay in place. I’m just kind of struggling with how to wrap that area so that I can contain the drainage any advice would be helpful Thanks.
aldresselhaus@hopeforhs.org
Hey! I’ll make a little video sometime soon explaining all the bits! Some people have had success using feminine products because they can be stuck on the outside of clothes. For your thighs you might try some boxer brief style underware from the men’s section. Stick some pads on the legs of the boxer briefs to catch any drainage.
Zig
I’m relieved to know I’m not the only one. I feel so alone sometimes. I don’t ever tell anyone. I was finally diagnosed at 16. I’ve had it feels like all my life. I hate it when I want to wear a tank top or none sleeve shirt and can’t. Then my friends ask me why don’t I just wear it and I have to make something up like oh I don’t like that. It makes me so sad. But I must think positive because life is so much more and it could be worse.
Lesley
I spent last night literally bawling myself to sleep. I have a 21 year old son with HS. He was formally diagnosed while away at university a few years ago, after our GP said that he just had to live with it. He’s on his 5th doctor now. So, I’ve known WHAT HS is; but didn’t know the degrees to which it could progress. Until last night when I googled images. My son has explained what he’s experiencing but, but when I saw pictures, I lost it. I’m still crying this morning. He’s explained little by little over the years about the physical pain of simply walking without bleeding and missing uni classes because of that. He’s been depressed and has cut himself off from social activities, staying alone in his room. I’m so heartbroken. I woke up this morning telling myself that I NEED to help him, and others, find help. But I’m not a doctor. I don’t have HS. I feel so helpless. That’s what lead me here. He isn’t into support groups because talking about it makes him very emotional. His self esteem because of scarring has caused him to avoid public swimming, working out with a tank top, having intimacy with girlfriends, etc. My husband is a Registered Nurse here in Canada, and was able to find a doctor friend ,familiar with HS, to take him on. He’s in turn referred him to a dermatologist (which here, can take up to a year to be seen), but also gave him a lot of dietary advice (which my son was already practicing after his own research). He also has a co-morbidity condition called pilonitis (spelling?); a cyst on his tailbone that tunnels into his body. He’s seeing a surgeon next week who isn’t hopeful that surgery can be done safely. He says people with HS heal more slowly, and he could be in bandages for four weeks, with risk of infection. I’m sorry to ramble. I just need to feel like I’m doing something. I didn’t realize just how serious HS can be until recently. And I’m wondering if anyone else has useful advice. Diet? Meds? Comfort measures? Bleach baths were suggested by one dermatologist? Anyone else heard of that. We have a hot tub, which he occasionally uses but says it only relieves symptoms temporarily. He wonders if a sauna would be a good idea. I found out this can be hereditary and recently connected with a cousin, online, who had it for 18 yrs before a diagnosis. I’ve had it recurring under one armpit for years. As well as my labia. But nothing chronic. And two of my immediate family members have had surgery for the pilonodial (sp?) cyst. Anyway, thank you for listening. I needed the rant. My heart breaks for all of you. Let’s hope for some magical treatments in the near future.
Terri
Hi
I am just learning about HS and realize I have. No to hot tubs. It’s a breeding ground for infection. If you Google bleach baths for HS, you can find info there. HS is awful and it’s so unfair that it attacks young people.
Marc
I was diagnosed with HS in 2013 after numerous visits to the ER and gastro drs. What worked for me was / is, more sleep, more protein ( poultry & fish), NO sugar ( even careful with high-sugar fruits), exercise (weight training), reduce stress. I learned that more muscle correlates to stronger immune system as well. All the above strengthens the immune system which fights / helps prevent infection. Regarding the stress dimension, adapting / learning from the monastic – Benedictine & Trappist experience has been of great benefit, and I’ ll add a plug for “12 Rules For Life”, rule #2.
Corey
In Summer I was diagnosed with HS, I am currently sixteen. I feel as if I have always struggled with my skin whether that be from irritation or a cyst forming from daily activities. I feel as if being a woman is difficult for me personally, having constant restrictions on my body. I feel as if it makes me very much different from my friends. I figured my skin was just sensitive until I was told HS is highly undiagnosed. I started going to therapy because I realized I couldn’t do this on my own. I realized that my skin should not determine the people I will meet and love entirely. Recently, school has been very uncomfortable for me. Sweating, sitting for long periods of time, etc. I’m in the process of getting a 504 for my condition so I can be excused if needed. Hope this can help anyone in some way, you are not alone.
Katrina
Im really happy to see a supportive dialog about HS it has been one of the most debilitating conditions to have. I was diagnosed formally in 2014. It has been hard to have intimate relationships because you just don’t want to explain it. I just think it would be hard to believe they look disgusting. I have had surgery under my arms twice. And the moved around for a bit afterwards. To my inner thighs tailbone now back under both arms again back to back. The dermatologist is recommended Humira now due to the aggressive behavior of the HS in my body. But that medicine is full of potenially bad side effects. My body has become antibiotic resistant so I’m giving the recommendation some deep thought. Does anyone have experience with using humira
Bettina Cosby
Hi Angela,
I’ve been battling with what I thought was a rash, then “excessive boils” (in bad areas!) for years. Finally, about 6-7 months ago I got the diagnosis for HS. While I was glad to receive a concrete diagnosis, I’ve only watched my condition get worse, more lesions appear, and sometimes I can’t even sit down for long periods of time, I’m still hoping for a wonder drug – preferably topical – as I really don’t want to get injections, Your site has been great as it’s very informative. I especially like the travel/go kit ideas since I travel for work a fair amount. I have 2 questions… does HS become more prevalent in the summer (the warmer months)…and is there any topical solution that generally works better than any of the others? Thank you so much! -B
aldresselhaus@hopeforhs.org
Many people do say heat and humidity worsen their condition. As for topicals, I get the most benefit from the lidocaine for pain relief.
Meghan orozco
Hi,
I have been battling with HS for the last 8 months. I had at one point I believe over 25 lesions on my buttocks, my breasts, back of my upper thighs and also the back of my right ankle. I had no idea what was wrong with me!!!! I was on my 6th trip to the emergency room and all were failed attempts at receiving any kind of help. The ER doctors all just assumed I was drug seeking, and would give me a course of antibiotics that I had already been on and did nothing. NO ONE, NOT NO ONE would listen to me. And to make everything harder and more hopeless I was homeless at the time as well. I remember leaving the ER one night crying so deeply, I had no home to even go back to so I could rest and try to care for myself. I can honestly say I have never felt so alone and scared. The pain was unimaginable that night I moaned and cried myself to sleep. Sorry for the sob story I’m sure you didn’t want to know all that lol. I do have a couple questions, 1) how can I get the pain under control? Topical creams are so hard for me to apply because it hurts too bad. What are some of the options for the pain. 2) how can I make the smell go away or dissipate? It is so embarrassing!!! 3) what is the average amount of time that a “flare up” can last because this one has been months it seems like. Please I want to know how to make my life easier and daily functions not look like life altering mountains, even if it’s just for a moment of relief from this horrible problem. And one more thing, if HS has caused me to not be able to work or perform daily activities, would I be able to apply for social security/disability benefits?
Thank you for listening to me,
Meghan in San Diego
Angelia
My General Practitioner believes I have this and from research it looks very possible that this is what is causing my issues from the last year. He doesn’t really know anything about it. Do you know of a specialist in the Wake Forest, North Raleigh, NC area?
Sandra Guilbault
Hi Angelia!
While nobody is lucky to have this disease, if you have to get treatment for HS you are in the right part of the world to do it! Dr. Rita Pichardo at Wake Forest, Dr. Chris Sayed at UNC, and Dr. Tara Jaleel at Duke are all dedicated HS experts that keep up with the latest research and even conduct a lot of HS research of their own. You would be in great hands with any of them! They also host support group meetings for HS through our organization, so please check out our online meeting schedule at hopeforhs.org/online
ERICA VARBLE
I CAN NOT FOR THE LIFE OF ME BELIEVE I FOUND THIS PAGE! I HAVE SUFFERED WITH THIS EMBARASSING CONDITION FOR 25 YEARS! AT FIRST I THOUGHT IT WAS AN STD, IT WASNT , IVE NEVER GOTTEN AN OFFICIAL DX BUT NOW THAT IVE SEEN PICS AND LISTENED TO OTHER PEOPLES STORIES, I AM 100% CERTAIN THIS IS WHAT I HAVE…I HAVE ALWAYS FELT ALONE AND ISOLATED, NOT BEING ABLE TO WEAR BATHING SUITS OR TANK TOPS, OR HIDING WHILE GETTING DRESSED AND JUST FEELING SO DEPRESSED. I CANT WAIT TO FIND OUT ALL I CAN AND START DOING SOMETHING ABOUT IT!
Stefanie Gerardi
I am so happy I have found you. I have suffered from this terrible disease for 22+ years. I joined your support group on Saturday for the first time and I cannot stress enough how excited I am to have finally found a community with people who truly understand what it is I am going through. Just from this first meeting my mood and mentality has begun to shift. In honor of HS awareness week I have started a fundraising page and have begun publicly posting about HS on my social media. I look forward to our next meeting. To all those suffering YOU ARE NOT ALONE!!! Love to you all!
aldresselhaus@hopeforhs.org
We are glad you found us! And thank you for setting up the fundraising page!!!
Jill
I wanted to leave a comment somewhere, anywhere. I see the photo above of the first aid kit and notice it has lidocaine and other such products in it. This past week I took my sister- a 50 year sufferer who was only diagnosed 12 years ago- to her dermatologist. This doctor runs a dedicated HS clinic in a major city. My sister had to have silver nitrate applied to an HS surgical scar which overhealed. If I had not INSISTED they would have AGAIN done this process without pain minimization. This is the second time I (lay person, not a doctor) was the one to request something for her pain. The first time was when I pushed them to prescribe gabapentin, which has helped her chronic pain. I cannot believe this medical group talks about “being there for the patient” yet has had NO empathy for the patient’s pain and made no effort previously for pain management. At a local HS support meeting I inquired about the use of medical marijuana and the doctor practically backed out of the room in fear. Yet, when the room was polled, almost everyone indicated they are using medical marijuana for pain management. I really feel for you all. My sister has a horrendous story of this disease and didn’t even share her condition fully with her own family as doctors told her she was simply “dirty”. Keep pushing, guys, be assertive with your care, and be your own best advocate. Best wishes to all.
Lisa
Thank you for posting the photo. I need to add some of those items to my kit. Two items I have in mine that are not in yours are Depend undergarments and plastic trash bags. I use the trash bags as a barrier between me and a chair or sofa when visiting family/friends. It’s embarrassing, but messing up their furniture would be worse.