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
Edith: MCTD, En Coup de Sabre/Parry Romberg's, Lichen Sclerosus, Rheumatoid Arthritis, Sjogren's
I always felt very tired and put it down to the fact that I was a mother of three small children, although deep down I knew it wasn't normal tiredness.

Teapot and Tea Cups by Shelley EnszHi. In about 1990 at age thirty-seven I became asthmatic. For years prior I had suffered rhinitis. I always felt very tired and put it down to the fact that I was a mother of three small children, although deep down I knew it wasn't normal tiredness. I attended the doctor with a lot of complaining about struggling to walk sometimes.

In 1994, I developed foot drop after a transient ischemic attack (TIA). (I have had many TIAs since.) I was taken in to the Neurological section of The Southern General where they ran a series of tests, and the neurologist diagnosed nerve damage. The foot drop gradually got better although I still have a general weakness down my right side.

It was about 1997 when my husband, Jim, told me that I had a bruise on my back where my bra clasped. I suffered greatly with intermittent joint pain, severe headaches and stabbing pains in my left eye. I spoke to my general practitioner (GP) about everything so he took some blood work and the next week he told me that I had tested positive for rheumatoid arthritis and that I wasn't to worry about the mark on my back. I am allergic to all anti-inflammatories so I just had to suffer and get on with life.

By 1999 I noticed two strange lines going from my eyebrow on the right side of my forehead and in the middle of the lines my skin became light and waxy. This time I was referred to a dermatologist and he diagnosed scleroderma. I had no clue what that was. The dermatologist handed me a bunch of leaflets and told me to read them when I got home. I could not believe what I was reading. I was petrified! I got on the internet and found out as much as I could.

On my return to my GP, I felt I knew more than him. I had to beg for a referral to the rheumatolgist. He was very good and took his time checking me over and confirmed that I had rheumatoid arthritis, scleroderma, a heart murmur and lichen sclerosus, but because of my allergies he could not medicate me. Life went on.

In 2002, I noticed that my neck was very swollen and my breathing problems were getting worse. I was sent back to hospital this time I was told I had a huge multi-nodular goiter that was removed.

In January 2007, I was admitted to hospital three times suffering from meningitis. On the first admission I also had orbital cellulitis. I was told scleroderma was causing the meningitis. I have had several bouts of uveitis as well.

One evening in 2008, I had just finished eating dinner when I felt rather strange, hot and sick. I had a full blown clonic tonic seizure that was horrible. I still have regular seizures.

In January 2009, I was admitted again with meningitis. The neurologist diagnosed En Coup De Sabre and Parry Romberg Syndrome and he told me this is the cause of the seizures. I asked him to do an MRI but he said no and sent me home to get on with life.

I saw the rheumatologist again in 2009 and he told me that I also have Sjogren's Syndrome, osteoporosis and degenerative back problems which causes severe lower back pain. He told me he could do no more for me as in his opinion all I need is palliative care. A lot of other health issues are involved but I feel I have said enough.

I would like to thank you for the effort you have all put into creating this site and others like it. I get very little support from the NHS doctors in my area. My GP is fabulous, but at the end of the day it is not enough. I would be lost without people like you.

To Contact the Author
Edith
Email: Withheld by request
Story edited 02-16-09 JTD
Story posted 03-13-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
LINKS
Difficult Diagnosis
Difficult Diagnosis Stories
En Coup de Sabre
En Coup de Sabre Stories
Eye Involvement
Eye Involvement Stories
Heart (Cardiac)
Heart (Cardiac) Stories
Osteoporosis
Osteoporosis Stories
Overlap Syndrome
Overlap Syndrome Stories
Parry Romberg's
Parry Romberg's Stories
Sjogren's Syndrome
Sjogren's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Sclero Forums
Symptoms of Scleroderma
Types of Scleroderma
What is Scleroderma?
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 Edna S: Linear Scleroderma
 
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