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've been wanting to tell you guys my story I've been putting it off for a while, but I think today is a good time though with the happenings. I'm 22 years old and I've been suffering from stage 3 HS for over 3 years now. I never knew what it was when I was in high school, but I was tormented for years even past High School, I dropped out of college due to all abuse I was getting. Someone finally convinced me to stop being "ignorant" and go see a doctor who alerted me to what I had and promptly had to drain an infection out of my groin area. 3 months later here I sit having been readily approved for disability due to the severity of my condition and waiting for my nurse to come show how to inject my Humira (scared out of my mind to take it) I don't know my real message here, but I just wanted people to know that this disease isn't the end of your life
You are so brave to share your story. I understand your concern. High school was hard for me also, and in college, I remember having to buy black sheet because I didn't want people to see the stains from cysts draining.
It feels SO good to have this opportunity to share my experiences in a safe place. Hidradenitis suppurativa is something that I have spent much of my life trying to hide. I was diagnosed at the age of 12 and have been fighting it ever since, until recently. Even when people would ask me what it was, I was always be too ashamed to say what was actually happening with my skin. H.S. has negatively effected my life in many ways. I have been unable to feel comfortable wearing bathing suits or even sleeveless shirts. I was unable to participate in certain activities that required uniforms that may show areas effected by H.S (ex. cheerleading). My family and I spent YEARS and YEARS trying to find a cure until finally I went to a dermatologist that told me flatout, there was NOTHING I could do. I had tried everything: antibiotics, new diets, drinking only water, buying false products online (iodine water), body washes with salicylic acid, alcohol, everything. Well, something inside of me was just unwilling to believe that there was absolutely nothing I could do to AT LEAST reduce the symptoms (cysts, boils, and discoloration). Well, in 2014 I discovered Ubiquity Box. I noticed my friends skin (she also has HS) looked amazing. I could see where her scars had literally disappeared.
Let me start off by saying this, as someone who has been given FALSE hope of treatment numerous times, I would NEVER and I repeat NEVER share a regimen or treatment that was not VERY VERY EFFECTIVE. Seriously, there is no worse feeling than anticipating your condition will be improved only to be sadly disappointed. I just wanted to explain that before I share with you this regimen that has changed my life forever, seriously.
Well, the Ubiquity box is a skin care regimen (soap, astringent, oil, and scented oil) that has SEVERELY reduced my HS symptoms. It has helped with skin discoloration, reduced the presence of cysts, and changed the quality of my skin.
For the first time in my life, people complimented me on my skin. I didn't have boils between my legs or under my arms. My entire life changed. I had a moderate to severe case of HS but I literally can't use any other soap! I ran out of soap one week, and my symptoms came back SO BAD that I had to rush order another Ubiquity Box. The owner has HS and created the regimen herself, which is great because there is first hand experience for our condition.
Since this is a support group, I wanted to take the opportunity to share Ubiquity Box with you because it has helped me tremendously and I can finally live my life again. I can wear white shirts and don't have to have dark sheets on my bed (I couldn't do this before because of stains from draining cysts) I don't have to be ashamed when my legs are open because my skin is smoother and there are no cysts.
Hope your life changes like mine has. I have a confidence like never before.
Here is the website: ubiquitybox.bigcartel.com
Sadly, I don't think any of them can be considered a cure, but all of them have accumulated numerous reports of being helpful.
I feel your pain there dude. I am 57 years old, and was misdiagnosed for years. I'm on VA care. I was told that I had everything from hernias, to anal issues. It was terrible (as we all go though), to live in pain without knowing. I've tried some of those herbal cure alls. They don't work. The benefit is you got diagnosed early in life. I am always ashamed at the smell. I was told I couldn't exercise, so I cut down on food. Sweat is our enemy for what it can cause. I can tell you this Jason, God loves us still. I hope things get easier for you to adjust with this illness. This is far better online support group than most. People are eager to give advice here. Thanks for your courage in telling us this.