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Michelle T: Surviving Daughter of Systemic Sclerosis Patient

The scleroderma appeared at the latter part of her very short life.

As I look back now, my mother was a very strong and determined woman. Her problems arose shortly after menopause, which began in her early forties. She started with Raynaud's Disease and then Sjogren's.

The scleroderma appeared at the latter part of her very short life. At the onset she had cold hands and feet, finger ulcers, and dry mouth which were all big problems for my mom, but these symptoms were manageable with medicine and a little support from her loved ones.

Then came the symptoms that made life very difficult for her to live with. After visiting many different doctors, it was decided that my mother had systemic sclerosis. She had acid reflux very bad. They were considering an esophageal surgery to prevent the acid from entering the throat. She also had shortness of breath. We mentioned it to her doctor who in turn put her on oxygen. She was only able to walk very short distances.

After one and a half months on oxygen she was totally bedridden. In the end, she was rushed to the emergency room, where she arrived not breathing. She was on a ventilator and lots of life supporting medications for a week. The plan was to get her stable for a heart and lung transplant. The doctors were very excited to be a part of this process on such a complex scleroderma patient. Unfortunately, her heart could not take the stress and she passed away one week after entering the hospital at the very young age of fifty-five.

The many years that my mother lived with these symptoms she never complained. She always looked beautiful, but I know there were many days where she just felt unbearable. I look back now on how hard this whole venture must have been for her. Not only physically, but mentally too.

My heart goes out to all those stricken by this disease.

In memory of my mother, who was my best friend, my strength, my drive, and my compassion, I am compelled every day of my life to educate others of this disease and bring public awareness of the ways we can all make a difference in finding a cure so that the loved ones of others are not lost.

To Contact the Author

Michelle T.
Email: [email protected]
Story posted 06-10-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Caregiver Stories
Dry Mouth
Finger Ulcers
Raynaud's
Reflux
Scleroderma
Shortness of Breath
Sjogren's
Systemic Sclerosis

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!

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