I am eighteen years old and my father has systemic scleroderma. He has had this disease for about two years now. I'm not sure why my father has to suffer through so much pain, and I pray every day that he will be relieved from his pain?
I remember being so scared of losing my father. He is one of the greatest men in the world. He is more compassionate and wiser than anyone else I have ever come across. I lost my mother when I was two years old and I really was scared of losing my father, also.
I have a stepmother whom I love more than anything. She pretty much raised me. I also have two younger sisters, one seven and one thirteen, and two older brothers, one twenty-nine and one twenty-seven.
I remember one day, my youngest sister wanting to sit up on my dad's lap, and she was quite the chunk for her age. Anyway, my dad tried to lift her up and he could not. His joints hurt too badly. I sat there and watched him tell my baby sister that he could not hold her right then because, "It hurts too much." That broke my heart.
But this winter, it is not that bad. His skin is loosening up and he can go outside and do yard work and he can put my little sister on his lap. And this next summer, he will be able to walk me down the aisle when I get married. I have wanted that since I was a little girl, but even more so since he got sick.
I really believe that my father is healing. He gets stronger every day and can do more and more. I just wanted to let everyone know, that it may seem like a long time before you get well, but with enough prayer and hope, everything will be okay.
New email address needed 01-18-05 SLE
Old Email Prefix: actor_chick
Story posted 1-8-02
Story edited V1 7-27-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
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!
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: