A Reason to Hope
8:54 PM | Author: Angela
On June 17th, I had my most recent appointment with my dermatologist.

I guess I should probably start somewhere else. A few years ago I'd read about a therapy that was just in the beginning stages of testing. Only being done in small case studies, and still there was only one that had been completed at that time. It seemed promising. With most of it's patients reporting 70% improvement at least. The treatment was with Remicade.

Remicade (or Infliximab) is a drug used to treat autoimmune diseases by blocking tumour necrosis factor alpha (TNFα). It prevents TNFα from binding to its receptor in the cell. Remicade is administered by intravenous infusion - usually in 2 hours sessions.

As Remicade is not approved by the FDA for treatment of Hidradenitis Suppurativa, it was denied the first time I asked about it. That's when I went on my latest round with Accutane - which was again unsuccessful. Not surprising really. So I went in this time seeing that there had been more case studies logged, more information on how this was helpful to a lot of patients, and prepared to fight to try this treatment for myself.

I do have to say though that I like my current dermatologist. She's always been very proactive in trying to help me, and always extremely thorough in looking for new possible treatments. I walked in on that Wednesday afternoon, armed with my printouts, and let her do my exam. Let her see that it was just as bad - if not worse - than the last time she'd seen me.

And that's when she said it. The words that made a smile cross my face for the first time when thinking about my disease. She said that there were some new treatments that she thought would be a good idea. That involved either IV infusions, or shots (similar drugs to Remicade like adalimumab (Humira) and Etanercept (Enbrel).) She said that she wanted the head of the department to come in and look at me, and see what his opinion was.

And he agreed. They wanted to treat me with one of these TNFα blockers. I almost cried. I couldn't believe it. Could it really be so easy? The truth is that it hasn't been easy, but it felt like a huge victory for me. And it's not that easy to be honest. There are other obstacles, but they felt like nothing. I had to have a TB test, as well as some other blood work. It has to be pre-approved by my insurance - which I admit is my biggest concern. And there are some side-effect concerns.

My dermatologist did tell me that my insurance would most likely approve the treatment as there have been several case studies on this printed in medical journals and such. So it wasn't a completely off-the-wall treatment that they were suggesting. She also said that if they denied it, that we could contact the drug company themselves - because sometimes if the insurance won't cover it, the drug company will. Then she left the room to get everything set up.

I sat there in a daze. My mind racing over everything, wondering if this could possibly be the answer. I admit doubt started to enter my mind. But I shook it away, and looked at all the promising evidence that this would work. And then I reminded myself that even if it doesn't, my dermatologist is really willing to work for me to finding the best treatment for my HS.

When she came back in and went over all the information on the drug with me, told me the tests I would have to have done, and that I'd need an appointment with Oncology (because the infusion center is part of their domain), I was almost giddy with excitement. Nothing could ruin my day.

I've had the tests. (And bruises from the TB and blood work). I got a call that my Oncology appointment has been scheduled (July 20th). Now I'm just waiting to hear what the insurance company is going to do.

And I hope.
My Journey Thus Far...
3:09 PM | Author: Angela
I had originally planned to do this post after a few others that I have planned, but I think it's better done here. So here goes...

WARNING!!! This is a very candid story - may be uncomfortable for some to read.


I had my first lesion in 1998. It opened and drained without me realizing what it was exactly. It wasn't in an easy to see place, being in my groin. Because it was open, and hurt when I urinated, I went to the doctor thinking I had some sort of infection that they could treat.

It was urgent care. Because I simply didn't have the time to take off of work to go to my regular doctor. The doctor did an exam, and said he was going to do a test. I was fine with it, until he 'diagnosed' it as herpes. Visually, without any confirmatory testing. He did the viral culture test - which takes 2 to 7 days generally to come back with a result. I walked out of that office in tears. He visually diagnosed this as something that I could never get rid of, something I could spread to others, and something that would most likely affect me the rest of my life.

A few days later I get a phone call from the doctor's office. My test had come back negative. But as that can sometimes happen even if you do have herpes, they ask that you come back the next time you have a sore, and they will test it again. I had hope for a moment, but I was still devastated. Not to mention that the medication the doctor had prescribed me wasn't doing anything to help me.

I had accused my boyfriend at the time of cheating and giving this to me. Which went over really well I'm sure you can guess. I went back in for another test, which again came back negative. I actually did this 3 more times - each time with the same result. So I knew that wasn't it. Point was, what was it?

It got progressively worse. I started having a few lesions a month, which increased over time. I was hesitant to go back to the doctor because of my previous experience, so I just dealt with it. I bought a lot of bandaids, wore loose clothing, used anti-bacterial soap. Nothing helped.

Years passed. It wasn't until about 2003 that I finally asked about them again. By this time I had these painful lesions almost daily. I had extensive scaring, and I didn't know what to do about it. I was ashamed of my body, embarrassed, and my self-esteem was in the toilet.

My appointment was with a dermatologist. I was having a mole removed. When she asked if there was anything else, I just asked about it. She examined me, head to toe. And that's when I found out. Hidradenitis Suppurativa. Words I'd never heard before, but they would be common in my life. I can spell it without thinking anymore.

And then the other shoe dropped. There is no cure, and it's most likely going to get worse. I would deal with this the rest of my life. I left that office both with hope and despair. Knowing what you're dealing with is half the battle. Little did I know at that moment that I would be battling this still 6 years later. I still had my optimism then. There had to be something. Something natural, something they hadn't tested a lot, something that was just about to be found.

They put me on a long term antibiotic regiment. Which was pretty much useless as they weren't infected - ever. I did that for about a year, and grew more and more resigned to the fact that I would be in constant pain. I started taking advil and ibuprofen multiple times a day to deal with the inflammation and pain.

After about a year on the antibiotics the dermatologist decided that it was time to try something new. Accutane, she told me, could help 'cure' this, as it's similar to acne (and don't get me started on how wrong that statement is). I was warned of all the side effects, put on 2 forms of birth control - as if I was comfortable enough with my body to have sex.

I went through a course treatment of Accutane. There was no real improvement. And I was extremely depressed by this time.

I was put on various other medications - including Spironolactone and Metformin - none of which showed any improvement what-so-ever. In fact my HS was getting worse than ever.

That's when I stopped going to the dermatologist. They were talking surgery, and with all the research I had been doing at that time, I knew that surgery was painful - often involving skin grafts - and usually didn't work. The HS would come back.

So with all my research I started looking for 'natural' remedies. And trust me, if there was a report that it helped someone, I tried it. Honestly, I've been trying things for so long that I can't even remember everything I've tried anymore. I know I have a list somewhere, which I'll dig out eventually to post here, but it's not important right now.

Finally, about 2 and a half years ago I went back to the dermatologist. I'd read of some new treatments that were promising. Unfortunately they wanted to start me on Accutane again. They said that sometimes the second time around will show the improvement that isn't there after the first time.

Silly me, it'd been so long since I'd last done it that I agreed. What other choice did I have really. They weren't going to do anything else until I'd done this - yet again.

It didn't work. I was beyond frustrated by this time. And stopped going again. I was also changing jobs, and getting new insurance, which created a significant delay in me getting back to the dermatologist. Plus I was just tired of being given a bunch of drugs that they didn't know if they were going to work or not, only to have my hopes dashed once again.

During this time, I had progressed to Stage 3 of the disease. I have intense scaring and sinus tract formation. I remember one day in the last 11 years that I haven't been in pain. One day. It was a glorious day too, and I didn't want it to ever end.

I cried in the morning when I had a new lesion that hurt like hell.

I've often had to go to the doctor to have these lesions lanced because they were causing me too much pain. It's difficult and embarrassing to do this. Then there's the actual numbing, lancing and packing that is involved in this process. It took a lot to push me to this point. I have a high pain tolerance, so it's really bad if I have to go in to have it taken care of by lancing to relieve the pain. But it does happen - more often than I'd like.

I became more and more isolated. I kept myself to myself. I wore long sleeves, pants and never let anyone see my body. No one knew what I was going through. Not my family, not my closest friends. No one.

I can't even remember when I finally told my mom. And she was the only person that knew for a very long time. I made excuses not to do things to friends and family. I did actually have a relationship in this time. And while I managed to hide it from him - or at least he didn't ask about it - for 3 months, eventually he knew exactly what it was as well.

And we're pretty much to now. I still deal with it on a daily basis. I still take a lot of advil. Sometimes something stronger. My lesions are pretty much everywhere. My groin, under my breasts, my armpits, my stomach and buttocks.

But I'm living. Even though I sometimes still fall into a deep pit of despair, I always manage to pull myself out. More frequently now it's with the help of very good friends, who actually know - and don't judge me badly because of it. I can't tell you how thankful I am for those friends. Those few precious people that know what I'm going through, and still love and support me. There was a time when I didn't believe I would be blessed with friends like that.

And I maintain hope. I hold onto it so tightly. There are some promising new treatments, which I'll discuss in a post on my latest visit to the dermatologist just this past week.

I can't give up hope. Sometimes it's the only thing that gets me through the day.
HS - Basic Information
2:52 PM | Author: Angela
From HS USA:

Hidradenitis Suppurativa (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage (suppuration --- hence the name) involving significant scarring.

Abscesses may be as large as baseballs in some people, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.

Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites (deep tissue inflammation) are likely at these sites.

Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.



HS was first described in 1839 and has since been called many names. We still cannot agree on what to call it. Germans prefer Akne Inversa, the French still like to use Verneuil's, which we'll admit, sounds much better than Hidradenitis Suppurativa ('oozing inflamed sweat glands'). All are equally correct and equally wrong. All but names for symptoms of an underlying disease we don't yet know.

..."correct" names for this disease:

Hidradenitis Suppurativa (HS)
alt: Hidradenitis Supportiva
Acne Inversa (AI)
Apocrine Acne
Acne conglobata
Apocrinitis
Verneuil's disease
Velpeau's disease
Fox-den disease
Pyodermia sinifica fistulans


Internationally:

Hidrosadénite Suppurée (fr)
Hidrosadenite Supurativa (es)
Idrosadenite suppurativa (it)
Maladie de Verneuil (fr)
Doença de Verneuil (pt)
Akne Inversa (de)
гнойного гидраденита (ru)



...has been diagnosed as, but is not:
Folliculitis
Acne
Boils
Cysts (sebaceous, inclusion and subcutaneous)
Furuncles
Carbuncles
Poor Hygiene

...is definitely not:
contagious
Herpes
STD
Cancer
Allergies
Plague


...often happens in conjunction with:
PCOS / Insulin Resistance / Androgen Dysfunction
Crohns and other inflammatory auto-immune conditions
Anemia
Hyperhydrosis / hyperhidrosis
Depression
Acne Vulgaris / Cystic / Conglobata
Pilonidal cysts


Stages of the Disease

Hidradenitis typically develops slowly over time. Since there are no 100% successful treatments it will run its course. Development differs, however, from individual to individual. With some, the disease may stagnate and never develop past a mild stage, with others, it may escalate and become a debilitating disease. We do not know why.
This is how HS may progress:

Stage I. Solitary or multiple isolated abscess formation without scarring or sinus tracts;

Stage II. Recurrent abscesses, single or multiple widely separated lesions, with beginning sinus tract formation ("tunneling") and cicatrisation (formation of scar tissue);

Stage III. Diffuse or broad involvement across a regional area with multiple interconnected sinus tracts, significant cicatrisation and persistent abscesses.
Who Am I?
1:44 AM | Author: Angela
I guess I can start with an introduction first. And then my reasons for doing this blog. The answer to both of those questions are, at the same time, intrinsically simple and infinitely complicated.

How to do this? Perhaps I'll just layout all the things that people are so often judged on - even if only subconsciously.

I am a white, female. I have dark hair, fair skin, and green eyes. I'm, like a good majority of Americans, overweight.

My name is Angela.

What might not be so easily viewed and taken into account is who I actually am. I'm a deeply caring, loving person. I am extremely emphatic and have deep wells of compassion for people, animals and the earth herself. I am always questioning and love to learn; anything and everything. I've often been described by friends as both a haven - someone they can always rely on to be a safe place to be, and a geek.

My name is Angela.

Most likely if you've found this blog it's because you've heard of Hidradenitis Suppurativa. And you can probably guess that I have it. It's been a big secret for the entire time I've had it. There aren't many people that know I have it. Not family, not many of my friends. It's my last great secret. I have Hidradenitis Suppurativa.

My name is Angela.

I keep repeating myself because the biggest reason I'm doing this blog is I feel that those that suffer this debilitating disease, in silence, alongside me need a voice. I'm doing this to educate those that haven't been idagnosed, people that have never heard of it, and anyone that I can tell. That's part of the reason.

After more than 11 years with this disease. After all of my trials, continued searching for relief, if not a cure, it's finally time for me to stop hoping someone else will speak up and do something. It's time I did.

So I'm putting aside my natural shyness. Ignoring the voice yelling at me to shut up and not tell the world this about myself. Blocking out the whispering pleas to not broadcast this very private pain of mine. And I'm talking.

I'm not here to replace the fantastic organizations and support groups that are out there (which you can find in the links section). They're doing great work. I've found a lot of information on them. They work to get us noticed. To make us not so silent. I just want to add to that.

I want to put a more personal face to the disease that many can't talk about themselves.

I hope to be an easy place to come to. I hope to help one other person that feels alone out there. I hope to share the information that I've spent years searching for, in an easy to find manner. There's certainly a lot of it. I hope to help ease the pain of learning about HS, as we certainly have enough to deal with.

In the end I truly hope to push for research for a cure.

I hope.

Two simple words. And I struggle to hold onto them sometimes. Frequently in fact. But I hope.

So, welcome. Nice to meet you.

My name is Angela.