Replicant
SkinCell God
of Odd!
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Posts: 958
Not crashed this one yet!
Skin Condition: P
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« Reply #80 on: Friday April 29, 2005, 08:59:36 AM » |
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I'm on!  Late as usual, but better than not at all  |
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I'd walk to you through rings of fire,
And never let you know the way I feel
Under skin is where I hide,
The love that always gets me on my knees
Nothing ever lasts forever
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Wooley
Global Moderator
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Posts: 6502
Skin Condition: Psoriasis & sensitive skin
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« Reply #81 on: Friday April 29, 2005, 07:48:18 PM » |
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I have just signed this: I was 4472nd.
Wooley
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Roselle
Registered member
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Posts: 20
Skin Condition: dermatitis
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« Reply #82 on: Friday April 29, 2005, 10:31:51 PM » |
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Count me in too! Done and done.
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I didn't realize my name is supposed to be so *literal*!
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Bumpy
Full Member
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Posts: 161
Meh...just me. lol
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« Reply #83 on: Sunday May 08, 2005, 07:22:50 AM » |
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Look what you started!!! lol I'm number 4490. |
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"Butterflies and Zebras, Moonbeams and Faerytales...."
J. H.
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MarieC
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« Reply #84 on: Friday June 24, 2005, 05:14:09 PM » |
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#4664 |
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"To live a sheltered life is to live no life at all." - me
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Stellaman
SkinCell God
of Stella
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Posts: 755
stellaman
Skin Condition:
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« Reply #85 on: Friday June 24, 2005, 09:28:57 PM » |
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i done it dont know what it is but done
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 LIFE IS WHAT YOU MAKE IT SO MAKE IT COUNT FOR SOMETHING BECAUSE YOU ONLY GET ONE CHANCE TO MAKE IT RIGHT SO CHOSE WELL AND CHOSE RIGHT. LIFE WILL SOON JUMP UP AND KICK YOU IN THE ASS |
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Celery Peach
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« Reply #86 on: Saturday June 25, 2005, 10:12:39 AM » |
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All the signitures count, Thank you Stellaman  even if you dont know what it is  Its a lot of info to wade through, but bascially, its a long running petition to raise awareness about HS. Problem is this guys. HS is an 'orphan' illness. Its considered rare. Basically, none of the pharmacuticals want to invest in any specific research for HS medicines. Its the nature of the disease to be in private places, therefore people are hesitant to step forward and be counted. When we do, we are often told that we are to blame, for being overweight and unclean. Ignorant doctors often make no diagnosis, just teling people they are 'prone to boils'. Now tell me, how many other health problems do you get sent away with a shrug and a 'get on with it' attitude ? I just dont feel that we are taken seriously, yet lives are ruined, there are so many people out there living in agonising pain everyday. WE are being FAILED in a big way. Its my belief that many more people suffer with HS than actually know it. Often it makes you feel like you are banging your head against the wall. Not enough money in it for the Pharmacuticals...but if only we had a more acurate figure of actual HS patients...then maybe they would sit up and take notice. I'm currently trying to put a leaflet together also, hopefully will be able to put it here in 'word' format. All I can say to you guys, is that if you have a loved one or know someone that is complaining of boils, to advise them to see their doctor, and to push for the derm. Having reocurring boils is not normal in any way and you are not to blame. Other sites call HS, the hidden disease, well, we need to stand up and complain, never mind hiding ! Yes, its unsavoury, its embaressing, but we are no less worthy of treatment, just becasue our pain is tucked away in the most intimate places. Be brave, look in the gallery. Is our cause any less worthy than others ?
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Ryan
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« Reply #87 on: Wednesday January 04, 2006, 07:32:19 AM » |
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#5589
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People sleep peaceably in their beds at night only because rough men stand ready to do violence on their behalf  |
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andyb
Global Moderator
of Wackiness
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I've been Simpsonized!
Skin Condition: Eczema
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« Reply #88 on: Wednesday January 04, 2006, 10:40:10 AM » |
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#5590 Gosh CP - I hadn't appreciated just how bad this could be - thanks for the enlightenment and petition duly signed.  andyb |
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jojo
Registered member
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« Reply #89 on: Wednesday January 11, 2006, 09:13:49 PM » |
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#5613
There is a cure!
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Daisey
SkinCell Grand
of Little Angels
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Skin Condition: Hidradenitis Suppurativa
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« Reply #90 on: Thursday January 12, 2006, 12:11:17 AM » |
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welcometo skincell JOJO!
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anthropositor
SkinCell Grand
Iconoclast of Ideas
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Posts: 1754
The best medicine is caring and affection.
Skin Condition: previous lesions,blisters & plaques on hands & arms
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« Reply #91 on: Tuesday April 04, 2006, 06:53:19 AM » |
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5864
Anthropositor
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"The person who says it cannot be done should not interrupt the person doing it." Chinese Proverb.
"What all men speak well of, look critically into; what all men condemn examine first before you decide"-- Confucius
Pray to the Gods, for the Gods are not unless you pray to them.--Don Marquis
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Margarita4u
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Skin Condition: Hidradenitis Suppurativa
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« Reply #92 on: Thursday June 08, 2006, 08:29:13 PM » |
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6060! Great to see this is still going!!  Please everyone who hasn't do this!! It only takes a quick minute to do and it's so helpful to our cause!!   ~Marg |
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smokey
Senior Member
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cheeky girl!!!!
Skin Condition: hidradenitis
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« Reply #93 on: Friday September 01, 2006, 10:52:06 AM » |
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ok im in dont wana live with this the rest of my life. hope it aint too late!
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Life is for living, not worrying about tomorrow.
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cemeterybride666
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Skin Condition: hs
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« Reply #94 on: Thursday October 19, 2006, 10:28:44 PM » |
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so glad to find this site, I too have hs. I signed on # 6575 good job. 25 years of hs has been bad, many tracks and holes, I read somewhere about collodial silver being helpful so I'm researching that now. Good luck to all those who are affected by this tortorous disease. |
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belling
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Posts: 3
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« Reply #95 on: Friday May 18, 2007, 04:20:56 AM » |
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Signed!! it's more than 7000 now.. i really hope that the petition will work..
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L.
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Skin Condition: psoriasis
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« Reply #96 on: Monday May 21, 2007, 07:59:52 AM » |
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7191 Signatures Total!!!! I just signed |
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littlelady
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Skin Condition: atopic dermatitis and dyshidrosis (dyshidrotic) dermatitis
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« Reply #97 on: Sunday July 15, 2007, 06:54:09 PM » |
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I'm sorry for what your going through!  I don't have hs but I signed the petition anyway I hope it helps in finding a cure for your skin problem as well as other skin problems. Good luck! Please let us know what happens. Oh by the way I was #7312. |
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bunnie
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« Reply #98 on: Sunday July 15, 2007, 08:44:31 PM » |
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All of us who have very rare conditions are in the same position. Research is limited,money being the main problem, as it has to benefit a significant number of people with a particular disease, if you are in the minority then "tough" , seems to be the response we in this minority get. I signed too.7313
Bunnie
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« Last Edit: Sunday July 15, 2007, 08:53:10 PM by bunnie »
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CalamityJane
SkinCell Grand
of Whimsy
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Posts: 2928
Dogs speak every language!
Skin Condition: PPP
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« Reply #99 on: Sunday November 04, 2007, 03:45:10 AM » |
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Late, very, I know, but just saw this and signed it.
In the description I was very surprised to see that these tunnels/tracts secrete sterile liquid. In this disease I'd thought there was almost always bacteria involved.
Always something to learn.
Jane
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It's a good day when you laugh!
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