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

Robert B: Morphea

"Let's try this, let's try that, maybe we should cut it off. Take prednisone."

Excaliber by Sherrill Knaggs, ISN Artist I was diagnosed with this wonderful disease one year ago, although it is thought that I have had it for at least fifteen years now. I have it on my left foot, on my left shoulder blade and I have been told that I am probably systemic.

I have tried every topical cream-steroid and many different medications. My best results cam from a naturopathic doctor. Tanning beds and a sauna have been the best results for me.

The morphea has stopped spreading and seems to be shrinking now after a year of treatments. The treatments are I.V.C. and ozone therapy, tanning bed, infrared sauna two times a day to detoxify the body, natural herbs and a balanced diet.

I was a little disappointed with most of the doctors that I had seen. "Let's try this, let's try that, maybe we should cut it off. Take prednisone." I think one of the worst things to do is take multiple drugs. They all have adverse side affects that just compound the illness.

Right now I am tired all the time. My foot is swollen and sore, making it hard to walk. My disability has been discontinued, as they do not understand this disease, and there are no clear cut facts as to the type of scleroderma I have.

I sit here sore, sad and disappointed, not knowing what tomorrow will bring. What can I do? Who can I see in Ontario, Canada, that has the knowledge to diagnose me properly?

To Contact the Author
Robert B.
Email: robert.barrer@clarica.com
Story edited 10-12-05 JTD
Story posted 10-14-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Canadian Support Groups
Morphea
Morphea Stories
Scleroderma Experts
What is Scleroderma?
Types of Scleroderma
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 Roberta: Morphea
 
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 1998-2010 International Scleroderma Network
All Rights Reserved