Over 2,200+ pages in 22 languages!
 
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
Kath: Systemic Sclerosis (Scleroderma)
I hope there is an answer out there for us all.

Wisteria for Kath by Ione Bridgman, ISN Artist I am Scottish, but have recently moved to Spain, for the much warmer climate here. I lived in the northeast of Scotland in the city of Aberdeen until just over a year ago. Moving to Spain has had a positive effect on my Raynaud's, but has had no effect, so far as I am aware, on my scleroderma.

I have suffered with Raynaud's for about thirty years. Thirteen years ago, it was discovered that I also had systemic sclerosis (scleroderma). No one has really gone into the depth of my disease, such as, exactly where I am categorized in scleroderma, as I have just had blood tests and lung and kidney function tests about once a year in Scotland.

I believe this all began when I first developed allergies after I became pregnant with my daughter when I was eighteen. The condition worsened after my son was born two years later, when I developed asthma. It was a few years after that when my Raynaud's was diagnosed. I have suffered from poor health since then, always going to the doctor with some problem or another.

I suffered from quite a lot of stress, as I was in a bad marriage that ended in divorce after a few years. I remarried a few years later and it too ended in divorce after seven years. A few years later, I met and later married a loving, caring and supportive man, but my health problems continued.

When I was thirty-seven, I was sent for tests at a local skin clinic. At last I had a name for what was wrong with me: Systemic Sclerosis. It wasn't all in my mind after all!

I had a hysterectomy when I was thirty-eight and felt much better. Getting rid of the pain and cramps was one less problem for me to deal with.

I joined the Scleroderma and Raynaud's Association in the United Kingdom, and found out lots of information about the disease, although I am still confused today. I was a patient at Ninewells Hospital in Dundee, Scotland, under Professor Belch, for nine years before coming to Spain. During that time I had regular monitoring of the disease.

I still have to try and find a specialist here in Spain, but given time, I am sure I will find one and resume some monitoring of my disease.

I am fifty now and have recently taken early retirement from my work, due to ill health. I have often suffered from stress, and family problems, and work-related problems have only added to that.

I suffer from lots of associated problems with scleroderma, including high blood pressure and high cholesterol; despite trying not eating animal fat. I also have an underactive thyroid and I suffer from dry eyes and mouth. I take lots of medication daily for all my ailments, but I am determined not to let it take over my life.

I am taking classes to learn the Spanish language and culture and I want to join in new activities, as I still enjoy a challenge. My husband has a work contract here in Spain and we definitely want to continue to stay in this wonderful sunny climate.

I believe that my problems began with pregnancy, although there is no scientific proof. The experts say that I may have had exposure to some chemical in my past, but I do not know of any such chemical that I could have been exposed to, so I am not convinced of that. I have had a lot of stress in my life though, and that could be a contributing factor. No one in my family has this condition, although asthma, heart and kidney disease, high blood pressure and high cholesterol certainly runs in my family.

I do not think my family really understands my condition and what affect it has on my life, but my husband has been very supportive and tries his best to understand. Scleroderma is difficult for any of us to understand as the symptoms vary from person to person. I hope there is an answer out there for us all.

To Contact the Author
Kath
Email: Withheld by request
Story posted 6-29-03

Story Artist: Ione Bridgman
Story Editor: Judith Devlin
LINKS
Causes of Scleroderma
Causes of Scleroderma: Fetal Cells
Dry Eyes and Mouth
High Blood Pressure
Pregnancy and Scleroderma
Raynaud's
Scleroderma
Scleroderma and Raynaud's Assn
Systemic Sclerosis (Scleroderma)
Underactive Thyroid
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 !
ISN Artist: Ione Bridgman
Ione Bridgman ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our  Voices of Scleroderma Book Series .
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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.
Keep on Surfing!
Go to Kathi: Scleroderma/Lupus
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
Post in Sclero Forums!
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
1-952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved