What a Bad HS Dermatology Experience Looks Like

How could a visit like this happen to me? I am the founder of an HS Organization for crying out loud! I work with physicians as my day job, I am known for developing quick rapport with people, have a positive attitude and pride myself on not letting HS take me down, but that I keep stomping on it and am trying like hell to teach my daughter to do the same. Then this...(names have been changed)


To whom it may concern:


I hope that you're the right person to direct my concern to, if not, please pass it along to the appropriate person.


We were seen last week for an emergency injection. My daughter has HS and is 13, this was to be her first injection. She has shied away from them in the past not wanting to deal with the needle (understandable). We used to see Chelsea and she was wonderful, I was crushed when she left. She was kind, patient, and always willing to get me in for an emergency injection on a moment's notice, which is something of utmost importance to those of us who suffer.


We have never seen Sarah before; this was our first encounter. The visit started off fine. My daughter showed her the flare she needed injected, which had just started draining that afternoon. Sarah noted she thought that the abscess was infected because it contained pus and was red and swollen. I voiced my opinion that it was not infected, it was a normal HS abscess, it acted, looked and followed the course of almost every HS abscess I've had in my 30 years of dealing with this condition myself. She stood above my daughter and said "So, what do you want me to do about it?". I was completely taken aback. At no point did she ask me about my history or why I would know or think it wasn't infected. She said she was going to culture it and that she would let us know what antibiotic she should be on based on the culture. We elected not to put her on a broad spectrum antibiotic since I was of the opinion it was not infected, but was just a very painful HS abscess. She said she didn't think it needed to be injected because it was infected and that an injection wouldn't help.


Please know that prior to this I spent HOURS of my time over a few days talking my daughter into getting an injection. She is terrified of needles and who can bear the thought of injecting anything into an incredibly painful abscess? When Sarah said she didn't think that it needed to be injected she undid all of the time I've spent coaching my daughter on her HS and learning how to handle this and live with it daily. When she asked what I wanted her to do about it so unkindly, I told her I wanted her to inject it, however, rather than dealing with a teen who I had prepared for this, I was dealing with a child who was terrified all over again and didn't think that it was necessary because "that's what the doctor said". I had my daughter go through with the injection, but the road that was taken to get there was absolutely abhorrent, ignorant and harmful emotionally and mentally.


The MA went to get the injection prepared and I was making small talk, trying to quell a very tense situation, and said that I have had 5 wide excisions and they have been life changing for me in such a positive way. Her response "wide excisions are definitely not the way to go or a good idea for HS". Please, please, please tell me that did not just come out of her mouth was all I could think. Do you think that someone would CHOOSE to cut large chunks out of their skin if they had other options? Do you think that this was a great experience for me and that I'm now here trying to help guide my daughter through it and through the ignorance of what I heard that day? I would implore you to look at her file to find out that the culture came back normal, as would be expected with an HS abscess.


Sarah should not be seeing any HS patients. She is not trained or well versed in bedside manner, niceties or most importantly, in HS. Not only did she have NO idea of my background on HS, she has no idea that I am as well versed in it not only from my own experiences, but that I also run an HS organization and am a patient advocate. I was appalled by her behavior, demeanor, disregard for my opinion as a mother, misinformation, and complete negligence. She is exactly the type of provider that we implore HS patients to avoid at all costs.


Sometimes those who think they know it all are the most dangerous for our condition, as in this case. You may have "read" about this condition, but until you have had to live this daily, the pain, discomfort, bleeding, weeping, odor, the mental and physical impacts, the toll it takes on your self esteem, do not tell me about what is good or not good in your most humble opinion. If I tell you I've had a wonderful result from wide excisions and have been able to reclaim my life, the last person that I want an opinion to the contrary from is someone who can shave their armpits without issue, from someone who doesn't look at themselves daily wondering what makes them lovable or how anyone would want to be with them with their scarring and disfigurement.


I have thought long and hard about how to handle this situation. I can tell you that the first thing I did when I got home was to remove your clinic from my HS Providers list. I could not run the risk of sending anyone to deal with a situation like what I just experienced. I am sad I put my child through that and myself as well. We did have an appointment with Jenny today and she was wonderful, as she was to us in the past as well. I am grateful that there are people like her who care for HS patients, but I can not, in good conscience, put you back on my list of dermatologists knowing that someone like Sarah could see one of us.


This visit has made a lasting impression on me, and not in a good way. The providers like Sarah are what make people like us, with HS, not return to the doctor no matter what they can offer to help us.


I would implore you to have Sarah read the articles I've written about my experiences with HS here:


https://themighty.com/2020/08/excisions-for-hidradenitis-suppurativa-self-esteem/

https://www.hsconnect.org/brindley-kons-brooks

https://www.hsconnect.org/post/the-burden-of-guilt-parenting-a-child-with-hs

I look forward to your response.


Sincerely,

Brindley Kons

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