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

Moomary: Diffuse Scleroderma

It is really hard dealing with this, not knowing how it will affect me.

Blue Daisies for Moomary by Sherrill Knaggs, ISN Artist I was diagnosed with scleroderma and Raynaud's around December of 2002. Before that, I was having trouble with heartburn and acid reflux. My regular doctor tried me on many different antacids, but none of them worked.

Then I made an appointment with a gastroenterologist. He did an endoscopy around June of 2002. That showed inflammation of the stomach, so he referred me to a surgeon. I went to this doctor and he did several other tests.

I had a barium swallow, a pH balance test, and a twenty-four hour pH test. Then finally I had another endoscopy. It showed that my esophagus does not close at all when I swallow. The surgeon suggested that he could do a Nissen Fundoplication. At the time, we were not sure I had scleroderma, but were pretty sure I did. The doctor said he would do a partial rather than a full wrap, because of the possibility of scleroderma. At this time, I made an appointment with a rheumatologist.

That is when I found out I had scleroderma and Raynaud's. I had the Nissen Fundoplication surgery on February 7, 2003. This surgery made the biggest difference in the world. I have not had heartburn, and I can finally sleep at night. I now sleep with two pillows instead of four. I will need to have another endoscopy done every two years because of the scleroderma.

I am having a lot of joint pain now, and very dry eyes and mouth. My rheumatologist put me on medication for the pain and drops for the dry eyes.

That is about all of my story. It is really hard dealing with this, not knowing how it will affect me. I take it day by day. No one really understands unless you are going through this personally. Thanks for letting me share this with you!

To Contact the Author
Moomary
New email address needed 01-24-05 SLE
Old Email Prefix: maryfutrell35
Story submitted 5-13-03
Story posted 6-30-03

ISN Senior Artist: Sherrill Knaggs
Story Editor Sherry Jo Young
LINKS
Acid Reflux
Difficult Diagnosis
Diffuse Scleroderma
Dry Eyes/Mouth (Sjogren's)
Endoscopy
Nissen Fundoplication
Raynaud's
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: Sherry Jo Young
Sherry Jo Young was the ISN Story Editor for this story.
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 Morgan: Daughter of Scleroderma Patient
 
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