PLEASE READ EVERYONE !!

[ellymac]

also signed.  HS sounds like a *true* challenge and something that demands real answers.  em

[GuzziHeroV50]

I am not a number, I am a free man!  (but i signed anyway)

[laluna]

1267

[yebvas]

it has been signed

[Mrs. Heather Bee]

I signed too!  

[Nick]

If you are a new member, even if your don't suffer from Hidradenitis Suppurativa, please add your name to the list to try and get better research into this devastating disorder.

Thanks
Nick

[Celery Peach]

  Thanks Nick

...and dont forget to pop down to the 'cyber bar' after for a drink on me.

THANK YOU EVERYONE  

[PaulBeck]

Celery Peach!
You bet I signed the petition.  Every time my palmoplantar pustulosis acts up I think how lucky I am that it's not HS.  That stuff must be tough.
And I couldn't help but notice when reading the petition that western medicine in it's infinite wisdom just throws more antibiotics at it!  Pretty soon there will be so many antibiotic resistant bacteria we won't have any life-saving treatments left in our arsenal when we need them.
Yes!  Do the research!  Find the cause!
K

[monicagibson]

gee I feel like i was late in the game but i was 1529! I most say Great Job to however brought this to attention I will be forwarding this to my entire family and friends to get them to sign!  I go back to the doctor tommorw and I'm gonna take the address to her as well!!!   I have suffered from HS for almost 4 years before I got a name for this disorder now if they only would do some research and find some help for all of us out there!  I most say that my mother suffers as well so i would have to say I agree with the genetic thought! GREAT JOB! Any thing is possible if we work together on this!! Monica

[Monika]

Hi Monica with a "c"

Nice to meet ya!

- Monika with a "k"

[peterb]

 :hi:Monica

A warm welcome to the forum.  If you do a post in Let me introduce myself, I am sure our other HS sufferers can offer some advice.  Our Celery is doing research into the use of Manuka Honey along with another member for this condition.

[Gary]

#1611

Better late than never.

[totalfolly]

#1612.

totalfolly

[Celery Peach]

TY for signing guys  

Y'know it does give us hope, and it was so good to find your messages today, after having a bad derm appointment & feeling pretty sore.

Hi there Monica   Welcome to Skincell.

[monicagibson]

Went to the Derm office today another cycle of Tetracycline (2 months)  :'(I really don't think this medicine is working but she went to school not me! I ask her about the future if she was going to continue to write this precription or what .  She told me she could try acutaine(not sure on the spelling! , and she also told me about injection that has a little more side effects!! and of course I told her it's worth taking the chaces of side effects to find some releif.  It seems there are a few people out there that are dealing with the same thing as ME could you answer a few question that I have!  Have you are got these sores on your breast, or your stomach? do they also drain on there own.  The doc said today she has never seen anyone get them on there stomach and I have one there now thats my reason for asking .  I would also like to know if anyone has found any treatment that I could suggest to my doc!
Thanks to all of you for the WARM WELCOME!!!!
I think you people are what I have been looking for to get me threw this!!!! THANKS SO MUCH FOR BEING THERE!!!!

[Fishs]

 

  Hi there Monica ..

  Celery and Jo (missmash)  are the resident  top guns on this .

  They will be of great help.. Just ask questions and i am sure they will be only to happy to support and assist you with any info.

 Fish

[missmash]

  Monica...

i`m a sufferer of HS, had it about 6.7 years now..  confined to my groin/vaginal/butt areas !!  i have not had a sore on my tummy but many, many do - particularly the men!!  you can get the sores (lesions) just about anywhere there is hair bearing skin when the disease gets a hold, inc face, ears, neck, back, legs ...  you see my point !!!!

 having done the antibiotics for five years with no good outcomes i now don`t take them unless i have an infection - HS is NOT an infection and so antibiotics in the experience of 100`s of sufferers prove worthless..  i too have been offered the accutane  but have declined as it rarely helps HS and has too many nasty side effects to warrant a try in my opinion.  

about a third of my sores will drain - the rest come and go without draining..  there is no problem for me if they don`t drain, as all my sores come and go as they please - draining or not.

both CP and i have had much success with applying manuka honey to the affected areas...  there is quite a bit on this site about that so i won`t go into it here...

if you have any questions just shout up...  i have tried a lot of things and may be able to offer advice

mm

[Celery Peach]

  Monica, a big nod   to what our Jo has allready said.

I have had HS since I was 13/14, Im now 33. It started on my top inner thighs & butt.

Now I have it (as above) also outside & inside my vagina, even a suspected one on my cervix. In my pubic hair & a few above, also starting with the blackheads on my abdomin. I have them under my breasts and creeping down my tum where my boobies sit (im in pain if I wear a bra, the skin on skin contact is no good either   ) My armpits are by far the worst. I also have started with them around my hairline, and the odd one in my ear.

I took Tetracycline for 3 years, they worked okay at first, but soon caused me alot of stomach problems & eventually stopped working. I wont touch anti's now. Only for secondary infections ( cellulitis) which I use huge doses (3000mg) daily of Flucloxacillin for about 4/5 days, it usually settles the C down after the first couple of doses, by then I must say 'I am on my knees'.

I wont even try the Accutane. Please Monica, do a search and read up on the horrendous side effects whilst considering it. I have not found any research to suggest that it actually works for HS either. It is the derms treating us for what they know, Acne, we have not got Acne, we have HS !

I'm sorry but I cant offer you a cure, or even suggest a treatment that may work, I personally am very interested in getting some Radiation treatment, but it carries risks, the HS sufferers are divided on its benefits.

Yes, as MM said, we use the Manuka Honey, it is fantastic !

Mostly I use the Vicks Vapour Rub, as a drawing agent. I do dress & draw out the worst lumps, that used to grow to the size of walnuts, in my armpits. Since I have been doing this & lancing them carefully myself, I am coping so much better. I then use the Manuka to heal the wound, when I think it has finished its draining period. Most of them do keep re-filling, its a cycle, hmmmm maybe related to Menses.

EEEkkk sorry Monica, I have waffled, I could talk bout it all day   Im so glad you have found us   Like Jo said, If you want ANY help, advice, shoulder, Anything......just shout up !!

...and dont always trust your Derm to know what is best for you, yes they went to medical school but they didnt teach them all about HS it seems  

[sweetleif]

Yep, did done sign it, number 1701  

Good luck with it  

[Val]

Monica,

Welcome

Sorry to hear you also have HS, but as you have found out there are other members here that also have it.

Please do go and post in the Intro board and allow us all to welcome you properly.

Looking forward to reading more of your posts around all the boards. This really is a good place to be and everyone is very friendly and supportive.




Val