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Sparky: Diffuse Scleroderma

Three rheumatologists told me that I did not have scleroderma.

Bath Boats I was born in Philadelphia in 1969 (making me thirty now) and lived there until I finished college in 1990. I then moved to Chapel Hill, North Carolina, where I attended graduate school for eight years.

While I was working on my dissertation, I decided to refinish a rocking chair. Within twenty-four hours of stripping the rocking chair, I had swelling in both my hands and within a week I developed Raynaud's Phenomenon.

I had a very astute primary care doctor who ran and ANA and ENA and discovered that my ANA was off the charts and that I had a positive anti-SCL-70. Three rheumatologists told me that I did not have scleroderma. I had done my own research, however, and was convinced that I had the disease.

Over a year later, when I developed slight skin involvement, my doctor diagnosed me. I went to see prominent specialists who told me that I had rapidly progressive disease and needed to take d-Penicillamine. Despite many physicians telling me otherwise, I remain convinced that the chemicals in the refinisher acted as a catalyst for my disease.

While I was on d-Penicillamine, I moved to California and changed doctors. In August of 1998, a CT scan showed the first signs of pulmonary involvement, but the extent of the involvement was still minimal. Being newly married and wanting children, I decided to try to have a child. I had been warned by two prominent scleroderma specialists that I should not even consider a pregnancy. Fortunately, my doctor here was supportive of my decision.

~ She's a wonderful child and the joy of my life~

Luckily, I conceived the first month that we tried and I had a wonderful pregnancy. I had terrible heartburn and some preterm contractions, but otherwise all went well. My daughter was delivered two weeks early because her growth rate was slowing. She was delivered by Caesarean Section (C-Section) this past June. She was a mere 5 pounds 8.5 ounces, but perfectly healthy in every way. She is a wonderful child and the joy of my life. I am so glad I ignored the "experts." I am not saying the every patient with scleroderma can have an easy pregnancy, but there's very little research to support the stance that a pregnancy should not ever be attempted in scleroderma.

My pulmonary disease worsened only slightly over the past year. I now face the decision to take cytoxan. As with most treatments for scleroderma, the medical literature fails to provide convincing evidence that this drug works and I am having difficulty taking the plunge. I can only hope for divine guidance.

To Contact the Author

New email address needed 7-21-03 SLE
Old Email Prefix: mmayer
Posted 9-20-99

Story Artist: Shelley Ensz
Ineffective Treatments: d-Penicillamine
Pregnancy and Scleroderma
Pulmonary (Lung) Involvement
Raynaud's Phenomenon
Scleroderma and Pregnancy
Go to Stacie: Linear Scleroderma
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


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