Debbie

In March 1994, I noticed swollen hands and change of colors in my hands when exposed to cold temperature. I quickly found out from an Internist that this was Raynaud's Phenomenon. By April, I began noticing a tightness in my skin. I also had pain in my hip. I went and saw an orthopedic surgeon who said that I had problems with my tail bone and needed surgery. He said recovery would take a couple of months. This was near the end of June 1994 and I was getting married in August. Fortunately I decided not to have the surgery because I thought I might not be recovered by my wedding. (It turned out that surgery was not the answer.)

In September 1994 I was referred, by my general doctor, to a rheumatologist. He referred me because he speculated that I had scleroderma due to the tight skin. I had several blood tests done on me by the rheumatologist and it confirmed that I had diffuse scleroderma. My life expectancy was estimated at less than five years. I got pamphlets on this unknown disease and as I read them I felt worried about the seriousness of this disease. I continued teaching school (this was my first year teaching, so it was very stressful) and gradually got tighter skin and my fingers began to curve and become stiff.

In May 1995 my husband and I found out that I was expecting a baby. This was a big surprise. We were excited at having an addition to our family, but very worried at how my disease would be through the pregnancy and the condition of the baby. That summer I read all I could find on scleroderma and pregnancy. It seemed to vary from person to person. I was told by a doctor that I should consider aborting the fetus because of the seriousness of the disease. My husband and I felt strongly that I should continue with the pregnancy.

During the first six months of the pregnancy, I felt better than I had before the pregnancy. My skin was softer and I was able to move around with greater ease. I was not nauseated and had no morning sickness at all. When I reached 26 weeks, my blood pressure began to be elevated and through ultrasounds it looked like the baby had stopped growing like he should. My OB/GYN decided to admit me to the hospital under bedrest. I was in bedrest for the next two weeks. Then because of protein in my kidneys, high blood pressure, and the baby's lack growth, it was decided to deliver the baby at 29 weeks.

On November 17, 1995, Brian was delivered by C-section, weighing 2 lbs. 1 oz. Amazingly, he was able to breath on his own. It looked like all Brian needed was growth. But three weeks later he became very sick and it was discovered that part of his small intestine was infected. He had an emergency surgery and 7 centimeters of his intestine was removed. He had a colostomy bag for the next six weeks. Because of the surgery, he had to go on a ventilator. Brian spent the next three months in the newborn intensive care unit. Gradually, he was able to recover and now at 20 months weighs 22 lbs. and is close to walking. He has about a 15-word vocabulary and loves to imitate sounds. An IQ test estimated that he is at an 18-month IQ level.

I recovered from the C-section. However, I began to notice my fingers curving more and my skin becoming tighter. I had a difficult time bending over to pick things off the floor. My arms were so tight I had trouble brushing my hair. Becasue of the difficulty in doing things, we decided to move into my parents basement. We currently live there and my parents help my inabilities and with the care of Brian. In August 1996 I began having muscle weakness. I also began to be nauseated and had a hard time keeping food down. At this time I went to Denver to be involved in a double-blind experimental drug study for relaxing skin, reducing ulcers, and slowing down collagen build up. The study, involving the drug Relaxin, went on for the next six months. I did not have much improvement in my disease while I was on the drug. I just recently found out that I was on the placebo. However, I am now waiting for the real drug which I am guaranteed because of my participation in the study. I am also waiting for the detailed results of the study with those who had the drug.

I could not take any scleroderma drugs (D-Pennicilamine) during the study. During the study period from August 1996 to February 1997 I lost 55 lbs. I had frequent vomiting, loss of appetite, and severe nausea. I took Propulsid, Prilosec, and Compazine for the nausea. These medications helped a little. I currently am at a stable weight, but 50 lbs. below what I was before my scleroderma diagnosis, and still struggle off and on with stomach problems. In July 1997 I had my esophogus stretched because of getting medication stuck in my throat.

Currently my situation is as follows: I cannot get up and down from a chair. I cannot get in and out of a car with out help. I feel a tightness in my chest. My fingers are curved at 90 degrees. I have ulcers on my fingers, elbows, and foot. I have difficulty balancing when walking or standing. I have 40 percent lung capacity and am dizzy often. I cannot dress myself. I am taking Naproxen, Ultram, and Hydrocodone for pain. I try to take it only when I'm in severe pain. For my stomach I am still taking two Prilosec capsules in the morning and one Propulsid before each meal. I no longer take Compazine becasue it was not too effective. I take 750 mg. of D-Pennicillamine and tolerate it fine, but am unsure of its effectiveness. I would be interested in anyone's feelings on this drug. I also take a prenatal vitamin and an iron pill. I have tried taking borage, salmon oil, and E-400 to help soften my skin, but because of their size I have trouble swallowing them.

Prior to my diagnosis, I had been very healthy with a very good immune system. I rarely was sick. I did have a serious bicycle accident in August 1987 which resulted in severe head trauma. I was hospitalized for three weeks. Miraculously I did not have lasting problems from this accident, other than a few seizures (I was on Dilantin for five years to control the seizures). Currently I am seizure free. I have heard there could be some correlation between severe head trauma and scleroderma. Any feelings on that anyone?

I have enjoyed reading others' personal experiences dealing with scleroderma. I keep in contact with Kathi Mauler in Denver and Karen in Ohio. I do not know anyone else in Utah with diffuse scleroderma. If there is anyone with similar problems or questions, please let me know. I have found great comfort in sharing each others' experiences.