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#21517 - 06/18/06 04:02 PM New to support group - advertizing?
paulstappenbeck Offline
Member

Registered: 06/18/06
Posts: 5
Loc: WA
I have Darier's disease and am looking for a safe place to share my story and to read the stories of other people with Darier's or who are using Acitretin and other Retinoids.

The group that I have been in was invaded by people selling their wares. I find it a bit disheartening when I share my story that is hard to share I get a follow up of “let me send you a free sample”. When I object in the group I get a negative reaction. What is this group like in regard to this.

Thanks for your reply.

Paul

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#21518 - 06/18/06 05:52 PM Re: New to support group - advertizing?
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
This forum's definately safe. Everyone on here is so compassionate and empathetic. I've felt at home from the first time I clicked on the BB link.

I would suggest, if you don't feel comfortable sharing it in the General Discussion forum, to go to the "Other Forms" forum. You can find it on the index page. I frequently go there to ask questions about Netherton's Syndrome, which is sort of rare.

((hugs))
_________________________
Courtney
Mom to Julia

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#21519 - 06/18/06 07:33 PM Re: New to support group - advertizing?
gryphon Offline
Member

Registered: 04/12/06
Posts: 298
Loc: Alberta, Canada
Hello Paul

Welcome. I can second CShell regarding the BB culture here. As a open forum, it is inevitable that there will be posters with commercial interests. Posts of that kind though are quite rare here and not easily tolerated. You can rest assured that if you were to justifiably object to such posts, you would be supported by both members and mods alike.

Darier's is a related type of ichthyosis but, having done a site search, there does not appear to be many posts on topic. Maybe you could start up a Darier's thread. As already mentioned, you will certainly find an empathetic ear from many who deal with Ich in their lives.

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#21520 - 06/19/06 01:12 AM Re: New to support group - advertizing?
paulstappenbeck Offline
Member

Registered: 06/18/06
Posts: 5
Loc: WA
CShell
and
gryphon

thanks much,

Paul

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#29212 - 09/01/14 08:15 AM Re: New to support group - advertizing? [Re: paulstappenbeck]
Thippid Offline
New member

Registered: 09/01/14
Posts: 1
The objective of this double-blind study was to compare the therapeutic effects of acitretin with those of etretinate ( http://onlinepharmacyreviews.org/ingredients/acitretin ) in patients with Darier's disease. Twenty-six patients (10 males and 16 females) were included in the study. Patients were treated with 30 mg daily for the first 4 weeks and with an individually adjusted dose (10-50 mg/day) for the subsequent 12 weeks. Remission or marked improvement was obtained in 10 of the 13 acitretin-treated patients and in 8 of the 11 etretinate-treated patients who completed the 16-week treatment. The usual mucocutaneous adverse reactions of retinoids were observed in all but one patient. There were no significant differences between treatment groups with regard to the incidence of these reactions.


Edited by Thippid (09/01/14 08:17 AM)

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