SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Salina: Surviving Granddaughter of a Scleroderma Patient

"My Sweet Grandma"

Cloudy Day for Salina by Sherrill Knaggs, ISN Artist My grandma died about two years ago from scleroderma. I am not too sure when she was diagnosed, but when I was in the sixth grade, we found out that she was sick.

Being a child, no one really explained it to me. All I knew was that she could not digest her food properly. She was fine for a couple of years. Then when I was a freshman in high school, she got sick again. This is when I started noticing that what she had was really bad. My mom and I would go over and take care of her every Sunday. At first she could not keep food in her system and she lost a lot of weight. She went to the hospital a lot. They wanted to keep her on a tube so she could get food in her system, so they kept a tube in her chest for a while. Next her joints stopped working and her skin was hardening. During this whole time she was still losing weight. This is when we noticed that she was getting really sick. Just going over from week to week seeing her slowly disappear hurt everyone.

The medical bills were too much for my grandpa. Grandma had to have special kinds of spoons and forks to eat with. She used eight different kinds of medications to help her go to the bathroom and to do normal everyday things. She also had a new kind of bed. All of this cost money. They asked my grandma's daughters to help pay for some of her needs, which caused family arguments. My grandma was getting so sick that the doctor said to keep her in the hospital or get her a home care nurse. So they got her a home care nurse.

But still every Sunday, my mom and I would go help her. We had to help her do everything and she would get mad because all she wanted to do was be able to eat by herself and be able to play with my little cousin, but she couldn't. All the medicine she took made her see things that weren't there. I remember one time when we were going to lay her down for bed and she started pulling away, saying, "The ants, the ants." She was scared to lay down because she thought there were ants on the bed. Sometimes she would start talking about a baby and asking, "Who's going to pick up the baby?".

When it got toward the end, some of my aunts would not go see her because they did not want to see her like that. It was to the point to where my mom would ask me, "Are you sure you want to see her?" And I would go. I had to go to be there with her. I loved her. My grandma would always tell me that when she goes, she wants me and everyone else to remember how she was when she was not sick, how she was when she would laugh and go out to the movies with us.

She died in September. It was one of those days I will never forget. I was going to go to school, but I had this feeling like I had to see her. As my mom, dad and I were just about to leave to visit her, the phone rang. I was in the bathroom. All I heard was my mom crying and saying, "She's gone, she's gone." And with that I knew she was dead. I rode with my aunt on the way over there. We talked about her and mostly cried. We got there and seeing her laying on her bed not breathing made me cry even more. I was hoping to God that she would start breathing again, but she never did. My other aunt had been there when she died. She had died in her sleep like she had always wanted to, with no pain or hurt. She liked to sleep because she said she could not feel any pain when she slept.

She is now safe in heaven where she is at peace.

To Contact the Author

Email: withheld by request
Story edited 10-25-02.
Story posted 10-30-02.
Tubal Feeding
Scleroderma Survivor Stories

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Sam H: Telangiectasia

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.

International Scleroderma Network (ISN)