Title: Basic Hidradenitis info documents
Post by: Celery Peach on April 11, 2003, 02:43:18 PM
I just thought I'd post this document here, I think its pretty well written (not by me :P)
Gives a good basic explanation of it :
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What is Hidradenitis?
This is an "uncommon" disorder of unknown cause in which boil-like lumps develop in the groin and sometimes under the arms and under the breasts. The lumps can also be found in other areas, such as behind the ears, in the crease of the buttocks and around the genitals. Although a few hundred papers have been written on hidradenitis, there seems to be relatively little solid knowledge about it.
· Although there is no medical proof, hidradenitis seems to have been found alongside many disorders that are apparently unrelated, such as Crohn's disease, obesity, Dowling-Degos disease, lymphoedema (swelling of the body tissues caused by a build-up of fluid), a form of arthritis, sarcoidosis, Down's Syndrome and the sexually transmitted infection chlamydia. From the people that have contacted the H.I.D.E. mailing list, there also seems a preponderance of thyroid disorders and autoimmune diseases. One of the theories as to the cause is that it itself may be an autoimmune condition. One person has mentioned that treating herself with an anti-candida diet drastically helped her HS.
· The use of some medicines, such as lithium, have also been linked.
· It is not contagious and cannot be caught.
· The condition is very slightly more common in women when the affected area is the groin, but there is no difference in occurences between men and women when infection is under the arms.
· In a study undertaken in Copenhagan, it was discovered that the disorder may not be as rare as imagined, but that patients are simply not diagnosed with hidradenitis. They suggested that there was a 1% chance of developing hidradenitis in any given period of 12 months (i.e. In a group of 100 randomly picked people, one person will develop hidradenitis within 12 months).
· The disease involves the apocrine and (rarely) eccrine (sweat) glands, the sebaceous (oil producing) glands and the hair follicles, although there is some disagreement as to whether the infection starts in the follicles and spreads to the sweat and oil glands, or vice-versa.
· There are often outbreaks linked with periods in women.
· It is thought that hidradenitis is dependent on the androgen sex hormones. However, the levels of androgens in hidradenitis sufferers are usually the same as in non-sufferers, although other disorders linked to androgens, such as acne, are commonly found with hidradenitis.
· The disease often shows itself during puberty, but has appeared as late as post-menopausal age.
· A bacterium called Streptococcus milleri appears to be a common organism infecting lumps, and it is suggested that a common bacterium that lives on the skin and in the nose, Staphylococcus aureus, plays a part in the early stages of the development of the disease.
· Bacterial infection was only found in about 50% of swabs taken of the swellings caused by hidradenitis.
· The tendency to develop hidradenitis is hereditary, but this does not mean that your children or other relatives will definitely develop hidradenitis.
The psychological side of HS
Depression, Isolation and more......
Hidradenitis Suppurativa can cause it's sufferer severe pain and discomfort, as if this was not enough there is also the emotional roller coaster which accompanies the disease.
Hidradenitis Suppurativa can dramatically change the life of the person it affects and those that are closest to them.
There are varying degrees of HS and some sufferers may NEVER reach the point where the disease progresses to the point where it takes control of your activities, the things you used to take for granted become difficult even walking becomes associated with severe pain. Your life becomes centered around your HS, what you wear, where you go and when you go.
Relationships with friends and family become strained as you become a slave to the suppurating lesions that now infest your body, making you a prisoner within that body.
Intimate relationships with partner's become almost impossible, for weeks or month's you are unable to have sexual relation's and then you are free for a couple of days, but your partner is not in the mood or too tired. For whatever reason this all too quickly becomes a vicious circle.
Some HS sufferers find they are no longer able to work which only increases the feeling of isolation.
You are increasingly aware of the odour which emanates from the wounds, even almost puritan hygiene regimes cannot rid you of the feeling that people are able to smell the poison which comes from your body.
This leads to self isolation, your confidence is totally undermined, you loose interest in your appearance, daily routine and loved one's. You do not wish to see anybody or go anywhere, this quickly becomes a downward spiral.
Is it any wonder then that 80% of HS sufferer's are also diagnosed with clinical depression.
Although the depression can be treated and some of the affects alleviated, it cannot be cured completely. To cure depression you must remove the root cause of that depression and as there is at present NO cure for HS this cannot happen.
Signs of depression include:-
Feeling's of guilt.
Weight Gain or Loss.
Feeling's of Paranoia.
Low Self Esteem.
Panic attack's when in crowds.
Erratic Sleep Patterns.
Loss of Appetite.
Forgetfulness.
Self Pity.
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Thanks for looking :)
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Title: Re:Basic Hidradenitis info documents
Post by: Celery Peach on April 11, 2003, 02:45:58 PM
| oops sorry Tammie, just seen your post with the links :-[ |
Title: Re:Basic Hidradenitis info documents
Post by: Nick on April 11, 2003, 03:16:19 PM
That's a great post CP :up:
It always helps to share info like that. People may read that and sudeenly click with some of the symptoms.
I really do feel for the sufferers of HS. It sounds like a really nasty disorder to have to fight. :hug: |
Title: Re:Basic Hidradenitis info documents
Post by: Bri9801 on April 12, 2003, 01:38:24 AM
| Thanks for the info, Now I know a little bit more then before I read this |
Title: Re:Basic Hidradenitis info documents
Post by: Celery Peach on May 19, 2003, 04:33:36 PM
| ^^ just bumping this one up, had a few Q's lately :D |
Title: Re:Basic Hidradenitis info documents
Post by: Alison on May 19, 2003, 08:00:54 PM
| thanks for the info celery :), there isnt alot of info out there about HS |
Title: Re:Basic Hidradenitis info documents
Post by: fishs on May 21, 2003, 01:38:53 PM
:hi:
Great Info Celery..
Somehow I must have missed this post .. ???
Very good post .. has a lot of excellent info..
Fish |
Title: Re:Basic Hidradenitis info documents
Post by: Val on May 21, 2003, 03:19:52 PM
Yes I think I missed it too ???
Good info Celery thanks for pulling it up again, like Bri I also feel as if I understand it a little better now. ;)
:hug: |
Title: Re:Basic Hidradenitis info documents
Post by: graydowney on May 22, 2003, 05:13:33 PM
| I would love to chat with others who are duffering from HS. I have come to a point where it is making my life totally mserable. It has always haunted me but at 47 it is time to understand it. |
Title: Re:Basic Hidradenitis info documents
Post by: peterb on May 22, 2003, 05:25:38 PM
:hi: Graydowney
A big welcome to the Forum, we have a few members here with the complaint you mention. If you goto http://groups.yahoo.com/group/hidradenitis/ there is an excellent support group for people with your condition.
But dont forget that doesn't stop you from posting here as well. Everyone is welcome, there is a good membership here and you can share a laugh or have a drink at the Cyber Bar. Hope you find the answers to your questions.
:) :) :) :) |
Title: Re:Basic Hidradenitis info documents
Post by: peterb on May 22, 2003, 05:33:22 PM
| We have three or four members who suffer from HS, so they can give you support as well. They to belong to both groups. it is good when we can share our experiences on skin conditions. |
Title: Re:Basic Hidradenitis info documents
Post by: Val on May 22, 2003, 06:29:47 PM
:hi: Graydowney,
Welcome to our forum ;D pleased to have you with us.
As Peter say's we do have a few members with HS here. Celery Peach being one of them, so you will be able to have a chat with them. That site Peter has put a link to is very good and they will make you welcome too. The rest of us have all sorts of skin problems but all are welcome. I have pustular psoriasis on both my hands and feet.
We are a crazy/happy bunch here and we love to meet new people, so please join in.
Looking forward to getting to know you better.
Val :hug: |
Title: Re:Basic Hidradenitis info documents
Post by: missmash on May 22, 2003, 09:20:27 PM
Hi Graydowney... i suffer with HS and would be happy to chat/share info... welcome to skincell
Jo |
Title: Re:Basic Hidradenitis info documents
Post by: fishs on May 22, 2003, 09:54:03 PM
:hi:
Hello Greydowney
Welcome along to the forum.
Yes have a good look at the info Celery has posted It is excellent ..
I must say I knew little of this condition and have been looking at the ramifications and understanding it a lot better with much mure clarity..
I am a Psoriasis Sufferer But I am very interested .
You will be made very welcome here and please feel free to post your thoughts and ask questions .
Many folk will help ..
Fish |
Title: Re:Basic Hidradenitis info documents
Post by: electric_ian on May 22, 2003, 10:49:49 PM
:hi:And welcome to skincell Greydowny..
Ian :) |
Title: Re:Basic Hidradenitis info documents
Post by: graydowney on May 23, 2003, 12:15:04 AM
| Hi, My e-mail address is graydowney@aol.com. Please write me and let me know how to get in touch with you. I appreciate your kindness. Hugs, Denise |
Title: Re:Basic Hidradenitis info documents
Post by: Nick on May 23, 2003, 12:19:46 AM
Hi there Graydowney,
Welcome to the forum :hi:
Personally I think that all us skin disorder sufferers have much more in common than we might first think, I reckon that has been proved here.
I'm glad to hear that you're thirsty for information, we seem to get very little good info from our Doctors and Derms these days.
If it's HS info that you need then, as peter said, the HS group at Yahoo is fantastic with very good members and loads of information.
Just remember though Gray, whether your lumpy, bumpy, flakey or shakey ... you'll always be welcome here ;) |
Title: Re:Basic Hidradenitis info documents
Post by: electric_ian on May 23, 2003, 12:28:19 AM
Yes as Peter and Nick say,the site that Peter posted is good,And we do interreact..I was at their party on Saturday till 5 am.. ???I am likely barred now though
Ian :slosh: |
Title: Re:Basic Hidradenitis info documents
Post by: Celery Peach on May 23, 2003, 08:53:28 AM
Hi there Denise :hi: I'm so glad you have found us. :hug:
I have *HS too. The Yahoo group that has been mentioned is a great source for information.
Please feel free to Email me anytime :D My address is to the left, under my pic :D Just click on the envelope.
Please also have a good look round here at Skincell, I'v been bouncing a few ideas round on alternative therapy. Its been great to have some fresh views from Mr Fish :)
Please do drop in the 'cyber bar' for a chat and a few laughs, i have found that laughter is my greatest weapon :)
Take care
Celery :hug: |
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