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Roberta A: Systemic Sclerosis/Overlap

Over my life I have had hundreds of cysts removed.

I was born in 1933 and life was not easy back then. We did not go to a doctor unless we were very ill. We were doctored at home. I was a child who always seemed sick right from the start of my life. I had one infection after another. I was a skinny little girl and never seemed to gain weight. School was very hard as I missed so many days and just could not keep up, I was always on some sort of medicine because of the infections, colds and flu.

At the age of thirteen, I had seventy-two warts removed from my legs and after that I started having small cysts start coming on different places on my body. Over my life I have had hundreds of cysts removed.

I never started my periods until I was eighteen years old, and was told it was because of my thyroid and there was medicine they could give me. At age eighteen I married and wanted a baby. My periods were never normal. I would not have a period for two to four months or I would have a period for three months straight.

After I married I had bladder infections and a vaginal infection at least once a month, so I was on a lot of antibiotics. Every time I was around anyone with a cold or the flu I would catch it.

By the age of thirty-four, I had been in the hospital a lot and had four D and Cs. Then in 1967, I was told I would have to have a hysterectomy because I was bleeding all the time. After surgery I was told I had hundreds of cysts all over my insides and they had remove them.

In 1974, more large cysts were removed from my head. In 1977, four large cysts were removed from my right breast. In 1978, five large cysts were removed from the left breast. In 1978, my thyroid was removed because of Hashimoto's disease. In 1979, they removed a cyst the size of a grapefruit from my bowel. In 1992, they opened my throat twice because I could not swallow. In 1994, I had to have the throat opened again. I had very bad stomach acid all my life. In 1995, I went in for exploratory surgery and they removed another large cyst and endometriosis. In 1996, a large cyst was removed from my back bone. In 1999, two more large cysts were removed from my back. In 1999, I had a double bypass on my heart. In 2001, I had diverticulitis and spore in the bowel and was in the hospital six times. In 2002, my gall bladder was removed. In 2003, I had major back surgery; five operations at one time, and twelve pieces of titanium put in the back bone with a nerve conductor. In 2004, they removed a nerve conductor. In 2004, move cysts were removed from my right breast. In 2005, I had diverticulitis again, every day all day.

In 2005, I changed doctors. I had a wonderful lady doctor. I was so very sick and felt I was dying. She started tests and found I had systemic sclerosis. She sent me to a heart doctor and more tests, a nose and throat doctor who found I had sinus infection and had to operate, two rheumatology doctors, who both said because I did not have thick skin I did not have systemic systemic sclerosis.

Then she sent me to two cancer doctors. The first one said it was not cancer but it was a autoimmune disease. The next cancer doctor did a bone marrow test that came back as systemic sclerosis but no cancer. She put me on a IVIG drip and I have had two so far with no change yet, but for the first time in my life I don't feel like I am crazy.

At least I know what is wrong with me. I am going through a lot of pain now and can not go any place except to the doctors and the hospital because of the gas and diarrhea as I never know when it will start and it is nothing but water.

I am hoping to get in to a research program, god willing. Thank you for so much information and help.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

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: 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!

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.