TV Video: Hannah - Health Insurance Story. View her fight for insurance coverage for the SCOT Trial, with David Becker, ISN Assistant News Guide.
Tackle Scleroderma! Join/Shop/Donate
SCLERO.ORG by the nonprofit International Scleroderma Network (ISN) is a full-service nonprofit charitable foundation providing stellar research, support, education and awareness
Search sclero.org:

Patient & Caregiver Stories Main Menu
(English) Stories by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z
All Stories by Date Posted: 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 ;2009
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Tutter H: Lichen Sclerosus
Since this is an autoimmune disorder,
I have no idea how long this relief will last or if it will completely go away.

Yellow Rose for Tutter, by Sherrill Knaggs, ISN ArtistLichen sclerosus is a painful skin condition that typically affects the vulva (or penis) and anus. It sometimes occurs in overlap with scleroderma. It is an autoimmune disorder. It is not contagious, and it is not sexually transmitted.

I am sixty-two years old. I have had eleven breakouts throughout the vaginal and anal areas of my body, as well as my arms and on my back.

I am hypothryoid, and so are several members of my immediate family. I have many allergies to foods such as soy products and other items such as feathers, metals, etc. Fortunately, other than my arms, which were treated by X-ray at age sixteen, my lichen sclerosus breakouts elsewhere were never that severe (mostly just itching), until about five years after I had my only child at age thirty-five. After that, the eruptions became very severe, swollen and skin-darkening.

After consulting many gynecologists and dermatologists, I was finally diagnosed with lichen sclerosus at age fifty-eight. The latest dermatologist suggested that I take one or two 800 mg folic acid tablets per day, besides the usual steroid cream prescription. Since I had not heard this before, I tried the folic acid tablet without using the steroid cream. Surprisingly, the eruptions and itching have subsided—not totally, but to the point of a welcome relief.

Since this is an autoimmune disorder, I have no idea how long this relief will last or if it will completely go away. Most new things just turn into a new allergy. But I just thought I would share. Best wishes to all of you who are suffering so much more than I have. I know how much more severe this could be and I actually consider myself fortunate.

To Contact the Author
Tutter H.
New email address needed 08-01-06 SLE
Old Email Prefix: hehurst
Story edited 10-21-05 JTD
Story posted 10-21-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Lichen Sclerosus
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
 
Go to Tyler: Scleroderma, CREST Syndrome
 
SCLERO.ORG is brought to you by the nonprofit International Scleroderma Network (ISN). The ISN is a full-service nonprofit scleroderma charitable foundation providing stellar research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
  1. Post a message in Sclero Forums!
  2. Email: isn@sclero.org
  3. English Email Form
  4. Español Email Form
  5. Italiano Email Form
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
United States
Toll Free Hotline in U.S.
Hours: 9am-3pm CST only.
Please leave a complete message, in English.
1-800-564-7099
Direct Line
1-952-583-5735
We are also known as the Scleroderma from A to Z web site.
© Copyright 1998-2009 International Scleroderma Network
All Rights Reserved