My name is Marie, and my husband died one and a half years ago from progressive systemic scleroderma. When Dean and I married, he was a healthy and fit man of thirty-three, working in the sand and gravel industry.
After our first year of marriage, he became increasingly more tired and achy as the days passed by. It took one year of multiple misdiagnoses before it was determined that he had scleroderma. He kept on working as he progressively got worse.
Scleroderma affected every part of his body. Dean was a strong-willed 'redneck' man and was never able to accept the severity of his disease. We went through a half dozen doctors until we found the last set, and they took good care of him until the end. For me, the hardest part was watching him suffer in pain and not being able to help him.
We tried numerous things to help him, from holistic medicine to an electrical stimulator placed in his spine to generate blood flow. Poor Dean was stuck and tested so many times then. Towards the end, he was improving. We placed him on a TPN: twenty-four hour IV bag to feed him and help him gain weight.
He started moving around again and we took his kids to San Diego for a weekend at Sea World and the beach. Upon our return two days later, he contracted an infection. The doctors told me he had a staph infection, spinal meningitis, pneumonia, and his heart was going ballistic.
Four days later he died quietly and peacefully while holding my hand. He was finally free from suffering. Dean left me as well as his two children behind, but we have survived.
I can only say to other loved ones that, indeed, it was the hardest thing I have ever gone through. Just hang in there and let God take you through it.
Of the six years I was married to him, he was healthy only one year. But I am so glad and proud to have been his wife.
Story posted 1-20-01
Story edited VH1: JTD 8-21-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Lung Involvement: Pneumonia
TPN: 24 hour IV bag
Types of Scleroderma
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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!
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.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.