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
Stories by Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms
Stories by Language: French | German | Greek | Italian | Polish | Romanian | Russian | Spanish | Turkish
Ingrid: Daughter of CREST and Overlap Patient
The doctors cannot help my father.

Flowers for Ingrid by Shelley Ensz Hi, two years ago, my father was diagnosed with CREST Syndrome as well as with Overlap Syndrome.

This year my father got really ill. He suffered from two episodes of oesophageal bleeding ; in the course of the last bleed, he nearly died. Since then oesophageal varices continued to develop and new varices were found last week.

What was also observed about two years ago, was that his blood results became very bad; even taking 20mg cortisone daily, his thrombocytes are about 30,000 and his leukocytes are 2,000.

His skin has become very sensitive. Even light pressure easily causes bloody effusion as well as skin bleeding. A sticking plaster can also cause these symptoms. His rheumatologist is giving him a new basic therapy with Quensyl. Before he got worse this spring, he was given Resochin.

Two haematologists have done bone marrow biopsies and yet they were not able to make a diagnosis and have decided that CREST Syndrome is the reason for his suffering.

My father's health is getting worse and I am very worried about him. Maybe there is someone who has a similar or the same problem and this person could write to me. The doctors cannot help my father. Most of the doctors in the hospital say that they are facing a puzzle.

To Contact the Author
Ingrid
Email: Rinkenbachingrid@web.de
Story posted 12-22-02

Story Artist: Shelley Ensz
Translated from German
by Dorota Dziadzio-Kouris
LINKS
(Deutsche) Ingrid: Vater das CREST Sydrom sowie Overlap Syndrom

CREST
Difficult Diagnosis
Heartburn
Overlap Syndrome
New Personal Stories
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
More New Stories: Feb-August 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Kannada  | 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.
Keep on Surfing!
Go to Irina: Polymyositis
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
or post a message in our Sclero Forums !
Shop, Join or Donate Now
(Also see: Contact ISN )
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S. 1-800-564-7099
Direct Line 952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved