Login
Questions or Comments!
admin@frumsupport.com

Get FrumSupport News! Join our mailing list.
Email:


Search

Navigation:

 Tehilim List  < Refresh >
TOPIC TITLE: Rare autoimmune diseases- PEMPHIGUS / PEMPHIGOID...
Created On 1/16/05 11:19 PM
Topic View:

View thread in raw text format


Emunah613
Junior Supporter

Posts: 15
Joined: Jan 2005

1/16/05 11:19 PM
User is offline

Pemphigus / Pemphigoid are rare autoimmune skin diseases that affect Jews of European descent in a high percentage.

If there is anyone out there with it or a family member with it who can share what treatments they are using or how they are managing please reply.Since this is a very rare disease there is limited information available out there regarding it.

 
Reply
   
Quote
   
Top
   
Bottom
     



Voos_Noch?
Junior Supporter

Posts: 4
Joined: Jan 2005

1/18/05 1:36 PM
User is offline

did you try http://www.pemphigus.com/ ? or http://www.pemphigus.org/

or here is a link to one persons account of dealing with it
http://darkwing.uoregon.edu/~sshapiro/Pemphigus/TableOfContents.html
 
Reply
   
Quote
   
Top
   
Bottom
     



Emunah613
Junior Supporter

Posts: 15
Joined: Jan 2005

1/18/05 3:52 PM
User is offline

I know about the first 2 websites,and i am in touch w/ the org. but thanks for the 3rd one,how are you familiar with it?

Also i posted this so word could get out,to provide people with information on this rare disease,so If anyone could contribute anything it would be appreciated.Thanks!
 
Reply
   
Quote
   
Top
   
Bottom
     



zelda zissel
Junior Supporter

Posts: 3
Joined: Jan 2006

1/14/06 8:36 PM
User is offline

I just joined frum support so by now you may have more information.

So far I'm not in remission, so any helpful information would be welcome. I am on pednisone, dapsone and cellcept along with stereoid shots to the blister site in the mouth. Am looking into nutrition. Be careful to check for osteoporosis and glaucoma.
 
Reply
   
Quote
   
Top
   
Bottom
     

View thread in raw text format
FORUMS > Immune Disorders > Immune Disorders < Refresh >

Navigation:

The information in this site is not intended to replace the advice of a doctor. FrumSupport disclaims any liability for the decisions you, the User, makes based on information on this site. By using this site, reading, viewing, posting or otherwise, you signify your assent to the Terms and Conditions of Use. If you do not agree to all these Terms and Conditions of Use, please do not use this site. FrumSupport may revise and update these Terms and Conditions of Use at anytime. Your continued usage of FrumSupport will mean you accept those changes.

If you think you or someone you know has a medical emergency, call your doctor, Hatzolah or 911 immediately. FrumSupport cannot and does not monitor forums and postings and cannot and will not pro-actively obtain help for users in need as FrumSupport does not have the funds or people power to accomplish such tasks and it will infringe on the anonymity of each user. Therefore, FrumSupport’s liability is limited by this paragraph and as further set forth in the Terms and Conditions of Use.