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Kath: Systemic Sclerosis (Scleroderma)

I hope there is an answer out there for us all.

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 Raynauds and Scleroderma 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

ISN Story Editor: Judith Thompson Devlin

Judith 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

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.

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.