Shavaughn interviews Kenton of Walk for Hidradenitis suppurativa (HS)

Image courtesy of walkforhs.org

“My name is Kenton Bailey and I am going to walk across America to raise funding for research of Hidradenitis Suppurativa and to spread awareness.”

Shavaughn: So, first of all, thank you for taking the time to speak to us. You’re currently planning a walk across the country in an effort to help some excellent charities combat Hidradenitis Suppurativa (HS). Tell us about your plans, and about the charities that helped inspire your walk.

Kenton: Hi Shavaughn, thanks for having me. Apologies ahead of time if I end up being a bit wordy. Yes, at this time I am finalizing preparations for a transcontinental walk across the southern United States to raise awareness and funding for Hidradenitis Suppurativa. It’s almost time to go! I’m very excited. Originally I was slated to start the walk on August 10th, but now it’s looking like I will head out on August 11th.

 

Image courtesy of walkforhs.org

 

I’ll be starting in Savannah, Georgia and ending in Oceanside, California. Walking twenty-five hundred miles ocean to ocean, the journey will take me through Georgia, Alabama, Mississippi, Louisiana, Texas, New Mexico, Arizona, and California. The walk will take me six months, give or take, but I’m trying not to put an exact number on it. The mood of the walk is not to be rushed, but to move at a slow and steady pace through the country, meeting new people, making new friends, and bringing awareness to HS.

You can find more details about this at my GoFundMe page:

https://www.gofundme.com/WalkForHS

So after my walk has ended, whatever GoFundMe money didn’t go towards keeping shoes on my feet and food in my belly will get split 50/50 and divided out towards two HS non-profit ventures. First and foremost is The Hidradenitis Suppurativa Foundation. What I like about The HS Foundation is that the founding members are doctors that are very forward moving with their mission. They hold an annual symposium, “SHSA”, Symposium on Hidradenitis Suppurativa Advances acts as a forum for researchers to meet and share knowledge about HS.

This group is all about performing and sharing research and trudging through the bureaucracy to make sure a system is in place for HS to receiving funding.

The second half of the remaining funds will be put towards my project, Walk for HS. At the moment WalkforHS.org is nothing more than my blog, but after the walk is over I will work to build it into a non-profit so I can continue to do my part for the HS community.

Walk for HS will encourage awareness by holding special public events, connecting HS patients to one another for both support and knowledge sharing, and serve as a disseminator of funds. This means it would disperse donations it receives out to the most promising HS ventures, whether it be to an organization like HS-Foundation.org, similar groups like yours, or to individuals or companies aspiring to create online or store-shelf treatments. In a nutshell, I’d like to envision its purpose is building an HS community that extends beyond the web into the real world and also serves as a seed spreader so all our eggs aren’t in one basket.

Despite the name, not all events held by Walk for HS will be walking events. Walking is a very difficult activity for some people with HS. “Walk” is to be a metaphor for moving forward. Whether it be moving forward with HS as a problem being solved or moving forward with hope and community.

Shavaughn: What inspired you to take action and raise awareness for HS?

Kenton: I’d say the biggest factor that really pushed me to choose HS is the profoundly small amount of research that has gone into it. I am grateful to the people that have put forth the time, money, and work into learning more and developing treatments, but the drive to do so should be much more widespread than it is.

People don’t know what HS is, people that have it don’t know they have it, and this lack of awareness means less diagnosed patients, resulting in little priority for more research in the eyes of medical professionals. I feel like a lot more people have HS than we realize.

Image courtesy of walkforhs.org

Walking across America tends to drum up media coverage due to the vast scope of challenges faced while covering such a large distance. For this reason, the walk is a great platform to speak from for awareness. Another major goal I have is to overcome fear. I have wanted to walk across America for years now, but have been afraid of taking it beyond just a dream, so it just made sense to do this.

Shavaughn: Is this your first major undertaking to raise awareness and funds for Hidradenitis Suppurativa?

Kenton: Yes, I’ve never done anything like this before. It will be the first time, but I don’t plan on it being the last.

Shavaughn: Has anyone’s awareness campaigns for HS influenced your thinking on the treatment/awareness of HS?

Kenton: I’ve been really impressed with what you all have going with HSAwareness.org actually. I love the different ambitious projects you are moving forward with. They are all very much needed and I am glad someone is doing it. Also, before planning this walk, I didn’t realize the HS community was growing so strong. After seeing how #HSAwareness and #HSSupport move beyond themselves and out into other social media platforms, namely Facebook, it’s encouraging to see that an awareness campaign is being received so well. It gives me so much faith in the community. I think you are really doing a good job lifting everyone’s spirits with hope and encouraging them not to be ashamed.

I’m taking some of that hope with me on my walk.

Shavaughn: Being a patient yourself, what are your experiences, and how has it affected your life?

Kenton: When I was first diagnosed, HS really influenced what I believed I would be able to do in life. I printed off a big list of inflammatory foods and naively said to myself, “Well I guess I’m never eating any of that stuff again.” I would look at job listings that were outdoors in the heat, things that would make me sweat and cause friction, saying to myself “Well I guess I can never work a job like that again.”

Even though my HS wasn’t extreme at the time, I knew that nearly every flare I got was going to leave a new scar. A scar that would make me that much more unattractive or just increase the likelihood that I will have to explain it in a romantic scenario. I felt if I didn’t follow a super strict diet that I would keep getting flares in more noticeable places until it was something I couldn’t make excuses for anymore, something I would have to explain to a romantic partner.

I, of course, learned later on that we just aren’t sure what triggers HS flares. It seems to vary person by person. Triggers can range from food, stress, exercise, hormonal changes, etc. It is best you learn what works best for you through trial and error and stick with it. Sometimes it feels like nothing works and this disorder is just going to do what it wants to. I hope that changes. Let’s make it change.

When I see someone, I am able to separate them from their disease. I can find other people attractive who have afflictions, so I came to realize that it is likely other people can find me attractive too. I have been lucky in that I have had understanding partners in the past who can see past my HS. Despite hurting my self-esteem, it has never been a factor in a relationship ending or one not beginning for me.

Shavaughn: Are you prepared for HS flares while on this journey, and how will you cope?

Kenton: I’m honestly not really sure what to expect from my HS on this walk. This walk is either the smartest or stupidest decision I have ever made. Part of the reason I decided to go ahead and move forward with the walk is that my HS has been getting worse and I feel like if I’m going to do it, that I need to do it now. I hate to even talk about my HS like it’s a problem, especially when I see some of the severe cases of HS other people are enduring.

Image courtesy of walkforhs.org

For the longest time, I was only attacked in my groin and inner thighs. Flares wouldn’t be constant, but when they came they were horrible. I thought I might never see armpit flares. Maybe I was just lucky. I was wrong. My luck ran out and couple years ago I started to get armpit flares and recently they have begun to show up non-stop, nearly every painful flare leaving a scar. My armpits now more active than even my groin and thighs.

In my personal experience, the ones that show up in stretch-marks seem to be the worst. Lots of bleeding, the worst kind of scarring. I’ve been lucky so far in that I haven’t had many of those, but at this rate, it’s only a matter of time.

I’m a bit of a rookie when it comes to treating my HS. I’ve only just begun to have to use bandages and that is only on occasion. I have surely been in situations before in which bandages would have been appropriate, but it never occurred to me to use them because in my mind I just had really bad acne, and who bandages bad acne?

My biggest worry during the walk is my thighs. They are going to be extra agitated over twenty-five hundred miles of walking. I have purchased lightweight moisture-wicking briefs to wear for underwear. I also have been using medicated menthol body-powder. The combination has been a life saver during my warm-up walks.

I won’t be using any deodorant on my arm pits during the walk and I don’t use it now either. I gently wipe my arm pits with alcohol. Bacteria do produce odor and the alcohol kills the bacteria. I have found it works pretty well for me. If I use any kind of spray it goes on my clothing (top of shoulders), not my body, and not in the pits.

When I do encounter flares along the way I will have bandages on hand as well as tea tree oil, alcohol, needles, and cotton swabs. I’ll be getting any advice I can from every one of you along the way.

Shavaughn: In your website WalkForHS.org, you mention ‘feeling lost most of the time.’ and how you view this walk as an atonement for what you call “selfishness”. What do you mean by that?

Kenton: Maybe I worry a little too much. Heck, I feel selfish just doing this interview because I’m talking about myself.

By selfishness, I mean that I haven’t been living my life for others enough. I have struggled with depression for a long time and tried many things to overcome it. In the end, the fear of failure and the fear of being worthless has stopped me from beating it. By putting in the time to try to overcome my depression, I haven’t been there for those who need me most. I can’t seem to find happiness and it’s taking a toll on those around me. I am blessed beyond belief with a great family, but somehow life feels empty.

I came to a realization recently that I am at my lowest when I feel like I can do nothing to help the people around me. Nothing makes me feel more worthless, nothing makes me want to shut off all my emotions as much as failing those I love. If I can do something incredibly daunting like this and overcome the fear of myself and the fear of the world around me, I can become strong enough to help others. If I can help others, I think I can be happy again.

Image courtesy of walkforhs.org

As far as feeling lost is concerned – that’s a complex matter. I’m not sure I know how to put it into words and be entirely honest about it, but I will try. There might be some deeply personal bits I leave out.

When I was a kid I loved being in plays. In pre-school, kindergarten, middle-school, high school and college. The whole way up I was acting. I majored in theater in college. I partied too much and dropped out, so it didn’t really matter what my major was in the end. When I was twenty-three I moved to California. A couple years later I moved to Hollywood where I did some background-acting and worked as a set-dresser and most notably an art director.

I didn’t love theater and film because of a fondness for the entire experience itself as much as I loved it because, as cliché, as it may sound, for a time I was able to pretend to be someone else.

I tend to read books about heroes in other worlds and I write stories about fantastic adventures in far away places. I get pretty obsessive about it. I used to even be convinced there is a way to visit these places somehow. I thought there had to be a way because if there wasn’t, that means that all there is – is this. My buddy Jeremy drew a picture of me once as my fantasy world alter-ego Phoenix Klaigh, but I guess I’m just stuck being me.

I’ve always wanted to be a business owner. I’ve started and failed with several entrepreneurial endeavors, dreaming day and night about different futures for my life. The successful tech mogul, the humble homestead farmer, the hard working factory dad.

Will I be happiest reaching for the stars and trying to change the universe? Or will I be happiest just embracing the simple things and focusing on family? Should I continue as a graphics designer, an inventor, a teacher, a humanitarian, an archaeologist, a farmer? I feel like I have to have it all, but having it all is impossible. Am I greedy? Am I meant to do something big and I haven’t found out what it is yet? Am I meant to shed off all ego entirely? Is destiny real or are we all just floaty bits in a cosmic soup?

Image courtesy of walkforhs.org

Maybe I put too much focus on identity, but I’m trying to believe I have a purpose. Everything I do feels wrong. I live too much in the past and the future, but never the present. That is the first thing that attracted me to the walk. I need to take a long, long, walk to figure things out. To figure everything out. I need to embrace a long and present moment.

Boo-hoo, poor me. Get over it dude. Haha. Sorry, I just have to laugh at myself right now. Apologies if this came out like a sappy journal entry or something.

Shavaughn: Have you been affected by Societal stigma? (lack of diagnosis, or made to feel ashamed or lesser than, by society or self?)

Kenton: I’ve never had someone directly try to make me feel ashamed, but I’ve definitely had friends that don’t take HS seriously. It feels pretty bad to have invisible pain. People don’t believe you when you say you can empathize with them and their problems because they can’t see yours. Or your friends think the remedy to your problem is something simple – like – oh, just use this cream or stop eating this thing or get more exercise. The fact that HS is a deeply rooted disorder and not some surface skin irritation seems to go over their heads.

Before I was diagnosed, people were even more skeptical. After diagnosis, short of pulling down my pants and showing the scars and flares, there was not much I could do to convince them I have something I am struggling with. Now that my armpits are being attacked, it’s a little easier to convince a skeptic because I have a place not as intimate that I can reveal.

At this point in my HS, the bigger pain I’ve dealt with is the emotional pain. My HS isn’t crippling physically at this moment, but it’s pretty unpleasant. The real pain for me has been feeling that I am flawed. That I was made wrong. That I’m not good enough. The embarrassing pain of having to explain to a romantic partner that there is no need to freak out, I just have a bad, non-contagious, skin disorder.

I have been blessed in that my HS hasn’t gotten to a point that is immediately noticeable. I know there are people who have it so bad they actually have trouble covering it up. HS that has progressed so far it is no longer an invisible disease to the world.

I like it most when I see people who don’t cover it up. I think there is nothing to hide. Hot outside? Wear that tank top with pride. As I said before, I really love the “I will not hide” #HSAwareness campaign.

Shavaughn: Since you are taking such a public stand against Hidradenitis Suppurativa, what would you like to say to all of the patients who also struggle with societal or self-stigmas and may also have similar feelings and experiences?

Kenton: Be proud of who you are. Physical flaws are part of life and aren’t the real flaws that matter. They don’t represent you. Mature people will see through your HS and see you for who you are.

Don’t be afraid to talk about your HS around people with more severe problems. Pain is relative. Suffering is subjective. Don’t be afraid to talk about your cracks with people that have canyons. By relating to one another we grow stronger.

Also, overcome your fears. That’s what I’m trying to do with this walk. It might be a foolish and unwise move for my body, only time will tell, but I feel that it will be a healthy move for my mind. The threat of HS will not control my decisions.

Shavaughn: How can people get involved?

Kenton: There are several ways people can become involved in helping out, whether it be in aiding me on my campaign or directly reaching out to some of the HS groups that are driving to make a change.

Walk for HS – ( WalkForHS.org )
Donate to: https://www.gofundme.com/WalkForHS

Any donation no matter what size will make a dramatic difference in the cross-country walk and will go a long way towards helping HS research. Thanks so much in advance. As far as following my journey on Walk for HS is concerned, you can follow me on my blog WalkForHS.org. On there you will find journal entries, links to my Facebook page for the walk, YouTube channel, Instagram, and Twitter.

To reach out and get involved directly in helping with HS, people can donate to the following organizations with confidence that they will be helping to make a real difference:

The Hidradenitis Suppurativa Foundation (hs-foundation.org)
Donate to: http://www.hs-foundation.org/donate/

Hidradenitis Suppurativa Awareness – ( HSAwareness.org )
Donate to: https://www.gofundme.com/hsawareness-nonprofit-501c3

Shavaughn: Kenton, thank you for your selflessness. It’s been a blast so far following all of your efforts. And again Kenton, I wanted to thank you for being true to your word and following through with this. I can’t imagine how scary it must have been with the go date coming up and I can only imagine what’s going through your mind while you’re on the road.


About the author


Shavaughn Ulven
(Director of Social Media at HSSUPPORT.ORG): Shavaughn is a 28-year old Native American woman who lives in Minnesota. As an HS patient, she is very passionate about advocating and raising awareness for HS patients, no matter the platform. She’s a mother of two and has a background in music and art. She’s a certified personal care assistant and hopes to become a doctor as well. Learn more about Shavaughn by reading her personal Hidradenitis suppurativa (HS) patient story “Agony’s Plague, The Battle Of A Lifetime“.

 

Shavaughn’s editorials can also be found on her dedicated website for HS patient support:

Discussing Hidradenitis Suppurativa with children
Life Hacks to Manage Hidradenitis Suppurativa
How To Keep Romance And Intimacy Alive with Hidradenitis Suppurativa
Therapeutic Writing Prompts to Inspire Your HS Blog
How to Pack and Re-Pack Hidradenitis suppurativa (HS) Wounds

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