Living with a Diease calld HS

August 2001

As most of you know I have a dibilitating condition called Hidradenitis Suppurativa. 

I have had this condition for over 15 years and I have had major surgery to remove the sweat glands and Hair Skin in 4 areas. My Groin on both sides and under both arms!

This condition has little known cause and virtually NO cure.  There is not much info on it as there is no one really doing any type of research on this condition!   I would like to see some place do a major funding for research for HS and there are folks that are working to get this done.. Although it is hard to do they are making small advancements in getting the world to open it's eyes to this condition!  If you would Please go and Sign the Petitions it would help tons! 

 Thanks Everyone!

I have searched the web for info and have found several great sources and several support groups to boot!   I will be listing the links to the info and the Support groups here for anyone that is intrested in finding out more about this condition or if you yourself are a sufferer and are looking for more info! 

I have started a support group for HS sufferers right here in BPAH!

I hope you will find the Info in this board helpful!

Hugs,

April 2005

I find myself once again needing surgery for the HS. I will have about 2-4' of hair skin removed. That is not th hard part, the healing time is. It takes months for the skin to heal. Some times HS victims (because that is what we are) find that they need to have multiple skin graphs in some areas due to the fact that the graphs slip off.

I pray I never have to go that route as it just goes from bad to worse.

I need to have the surgery now but find that due to other factors I must wait my turn.  Please help me out here with a thought or a prayer, that I can hold out until we have the time for this.

The Pain I am suffering at this time is undiscribleable!  I have not had pain like this since before my surgery in Sept of 2001.

This is bad, really really bad this time too. I have a area on the crease of my leg (yes down there) that is the size of a tennisball at the main point, right in the middle of the crease of my leg by the joint inside. It goes up to just below my tummy, up my inner thigh for almost 10" long by 5-6" wide, it fallows the crease of my leg to the back side of the thigh to where I had the hole drilled and Packed and all that rot for 2 and a half months in May to Aug. of 2003.

I am happy that most of you do not know what this is like. I can try to explain it to you so that maybe you can get an bit of the idea of the amount of Pain.

For the Diabetics and anyone who has had a Boil.....multiply that by 1000.

To all the Mothers who have had their children Natural at 10 cm Multiply that by 100.

Remeber this is NOT broken up pain..... this is solid , constant, 24 / 7 Pain.

Pain so bad you want to faint with every move. So bad you need help to walk, to stand, to sit, to take a shower, to dress, to function.

Also the ordor.... it is embarrasing enough to be so dependant on someone else due to pain, but the offensive odor of a seeping HS sore is just not somethiung you can even discribe!

Well Now that I have tried to let you in on a piece of Lisa World, I will end for today!