HS (Hidradenitis suppurativa)

[Shadow2004s]

I suffer with this horrible condition, I have reached stage 3, I am so ugly because of this disease, I won't let my husband near me because I am ashamed of the scars they are ugly and I am ugly because of them. There is no cure for it, antibiotics and creams to treat the infection is all they can do

[BritishSkinFoundationCharity]

Sorry to hear that. Try hstrust.org/contact.html for local support groups.

[lovesradio]

Please stop beating yourself up......you are beautiful inside and that is all that will matter to your husband. You need love and support, please follow the link from the BSF admin x

[Ronniii]

Your scars and this disease do not make you ugly, your mind and the attitudes of other people's perception of this disease make you feel ugly. Being ugly, and feeling ugly are two different things.

My daughter has suffered with this disease for the last fifteen years, and she has been at stage three for the last ten years. She has had numerous surgeries, every antibiotic you can think of thrown at this, told by untold doctors that is because of her weight, smoking habits, eating habits, hygiene habits etc. She has a multitude of scar sites, numerous active lesions on the go at the same time, but she is not ugly. She is a beautiful, brave person, who happens to have a horrible condition. I suspect that you are very similar.

If you look out there, there are a number of help groups on line for HS, I myself am a member of at least two on facebook.

facebook.com/groups/hsandgl...

The HS Diet Connection

facebook.com/groups/3341592...

HS~Strength in love and numbers

They are both very supportive, and will answer a lot of questions for you.

Good luck.

[Shadow2004s in reply to Ronniii]

There is something wrong with my immune system they can't seem to figure it out they take blood every 2 weeks and the results are still the same high white cell count my Dr said the fact I smoke doesn't seem to be an issue and I'm only over weight because of the medication I am on for other problems I will have a look at the support groups.

No amount of medication they give me seem to make any difference they are there all the time they burst open then fill back up again

[Ronniii]

The high WBC count is because HS is an autoimmune disease, your body is making them to fight a supposed infection, but of course there isn't one. There is little point giving you medication for the symptoms, the abscesses, when they do nothing to sort the original problem. They only come back again.

An autoimmune disease means that your system is constantly on full alert, and then starts to attack itself, in your case, your skin. There is a lot of speculation about HS being controlled by what you eat, and what you may have a reaction to, although every person has their own individual triggers. There is a condition called 'leaky gut', where the stomach lining becomes permeable, allowing bacteria and proteins into the bloody stream, which could be the cause of the autoimmune response. It might be worth talking to your doctor about it, although I would probably get some facts together first, and then present them to him. Most doctors aren't clued up on autoimmune, so tend to dismiss things if you don't show them some information.

Chin up, and good luck.

[katepoet]

Some off label treatments to consider aad.org/dermatology-a-to-z/...

[katepoet]

Hidradenitis suppurativa is inflammatory therefore it's possible that a non-inflammatory diet will help. Have you tried it?

Gluten-, soy-, corn flour, peanut-, dairy-free.

Several foods contain a high quantity of lectins. Lectins are inflammatory. The good news is that most lectins can be destroyed by cooking a food in a pressure cooker for at least 20 minutes. (There are electric pressure cookers now with timers so it gets easier.)

an example of foods that should be pressure-cooked is potatoes

Diet changes can make a difference very quickly so give it a try!

[Shadow2004s]

I am dairy free, wheat free, gluten free, soya free, everything that I can eat gets cooked in the oven I don't eat chocolate, cakes, pastry, I don't drink tea I do drink coffee I don't drink alcohol at all I do smoke I am over weight but that is down to medication and lack of mobility I suffer with various other medical issues