Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
I just found this site, expecting the worst but hoping for the best. I've got stage 3 HS, including a vast majority of my flesh being affected. I'm looking for people with this condition that want to be emotional support for eachother.
I've been suffering with this shiz for more than half my life and am feeling increasingly unstable as of late as my condition is only getting worse. Physicians and dermos around here won't scribe me anything or perform any snips on me because I have so much affected tissue that it would be too high a risk and so many docs in the midwest have been sued for scribing meds to peoples.
I'm constatnly feeling depressed, like I'm some kind of hideous freak. It's hard for me to even have a healthy love life or even feel confident striking convo with people because I feel so isolatedly grose and worry that any talk about my condition will just disgust them and turn them away.
I know this is hella long for a first post but, if you're reading this far, please feel free to send me a message. I'm admittedly desperate for someone to relate to and lean on and will return the favor.
Also, if anyone here lives in or around the Des Moines, Iowa area, it'd be dope to know I'm not alone in this town when it comes to this kind of struggle.
Thanks for reading. Hope to help and be helped.
Sign - Taco.
While I am not in the Iowa area, I would be happy to lend an ear anytime you need it. I, too suffer from HS (Stage II in some areas and Stage III in others) and I know EXACTLY how you feel. Almost no one in my life knows about what I suffer with and if they do they know very little. The ones who know the full story are the people closest to me like my husband, mother and father. But I LOATHE telling them anything at all. I have come very close to telling my boss and two co-workers because they don't seem to understand just how much pain I am really in, and shrugging it off by saying "I don't want to talk about the details" doesn't help much. But I just can't bring myself to do it. Too embarrassing to say the words "cyst" "boil" "sinus tracks" and "pus." Just can't do it.
I have one super important recommendation for you. I just joined this group today with the main reason of spreading the GOOD news I have found, but also to gain support because we all need it so very much. There is a book out there that will change your life. While I've only just begun the process that the book outlines, I am a full believer and I have already experienced relief. (And lost six pounds in two weeks.) The book is called "The Hidden Plague-A Field Guide for Surviving & Overcoming Hidradenitis Suppurativa" by Tara Grant. This book was written by a woman who suffered from HS for 20+ years and finally got it into FULL REMISSION. The process is long and can be difficult, but all of us who suffer from HS should be used to difficulty by now. While I have not fully healed I completely believe this book will help all of us. It's amazing to read, as it is written by someone who GETS IT and talks to you like you are a friend, not a patient or a stranger. It's easy to follow even when it gets complicated. There are so many people that would benefit from this book-I wish I could buy a million copies.
Please look for this book and buy it for yourself immediately. I found it used on Amazon, though I feel a bit guilty not paying full price so that the money goes to the author as she truly deserves it. But hey.....I am going broke with this disease and all the things I've tried, and we can only do so much.
Happy to talk to you anytime you need a friend!!
-Melora
I am also a victim of this strange skin disease no one seems to know much about. I have tried a lot of antibiotics, home remedies and was placed on Humira about two years ago. I finally made the choice yesterday that I wanted to try surgery after dealing with this for over seven long, depressing years. I don't know what to expect and I don't know what the outcome will be but I am willing to give it a try. Unfortunately I don't live near you but I am willing to talk more if you'd like.