The Disease That Took Dorothy Away
SCLERODERMA
Following is the story of my grandmother, Dorothy Prestenback's, struggle with the disease known as Scleroderma until it took her life 10 long years after it was diagnosed.
Below you will find links to different websites relating to Scleroderma for more information on this terrible disease.
It was in the late 1970s or early 1980s that Dot went to the doctor for a stiffness in her hands and was diagnosed with Raynaud's Syndrome (poor circulation). She was never told it might be something else. Dot's hands were always very stiff, and her skin would crack and bleed no matter how much moisturizer she tried to use on them. Eventually, in the late 1980s, Dot had to close down the beauty shop she'd ran from her home for over 15 years.
In 1989, Dot was diagnosed with lung cancer. Her doctors were not hopeful, as lung cancer is usually fatal. Luckily, it was caught early. She went in for surgery in early April 1989 and a good portion of her left lung was removed. She was in for a long, hard recovery. All of the cancer had been removed and did not appear to have yet spread. She was one of the very lucky ones. Sadly, later that month, her father, Horace Beauvais, passed away. She was not able to visit him while he was dying, even though they were in the same hospital.
Around the time Dot was struggling with her lung cancer, it was diagnosed that she suffered from much more than Raynaud's Syndrome. Dot had scleroderma. The Raynaud's had been a symptom of the bigger disease. Dot had Systemic sclerosis, the form of scleroderma that affects the connective tissue in many parts of the body, e.g. the skin, the esophagus, gastrointestinal tract, lungs, kidneys, heart and other internal organs and may also affect blood vessels, muscles and joints. She lived with the disease, but was always in a great deal of pain.
Walking long distances became impossible for her, and eventually she could barely drive her car (her love, "Lizzie", a 1983 Lincoln Town Car). By 1995, the disease was hitting her hard. She rarely left the house anymore, for even walking from one part of her house to the other was difficult and winded her. With the added misfortune of missing most of her left lung, she was hardly ever able to catch her breath. About 1997, she was put on oxygen 24 hours a day and didn't leave her chair if possible. She suffered from shortness of breath, tightening of the skin, and painful muscle inflammation. It was hard for her as she had always been such an active person...to be sitting in her chair all day long, watching TV. She cried in frustration often and told me she felt as if she was just sitting around, waiting to die.
By 1998, she was in constant pain and was now confined to her bed. A TV with cable was brought in for her because she could no longer make it to her chair in the den. That summer, she fell and hurt her back. For the next few months she suffered from excruiating muscle spasms and inflammation in her back. Painkillers seemed to do her no good. By August, she was so drugged up she was not herself. Besides the drugs, though, her mind did not appear to be all there anymore. Looking back, we realize she was slowly fading away.
On Labor Day, September 7, 1998 around 6 am, Dot collapsed on her way to the bathroom. Riley thought she had only broken her nose. He went to call Pam, his daughter, but when he returned, Dot was gone. Her cause of death was cardiac arrest..I believe her body could take no more.
I never knew of this disease until my grandmother was diagnosed with it. Statistics say that around 100,000 to 150,000 people in the US suffer from Scleroderma and women are 4x's more likely to develop the disease than men. The cause is unknown, and sadly, so is the cure. It is my hope that one day a cure will be found as this disease is a slow, agonizing, but definite killer. If you, or a family member, suffer from this disease, please email me.
Scleroderma Information Links
For victims & their family members
| Scleroderma Foundation |
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| I Have Scleroderma |
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| Scleroderma Foundation of Washington DC |
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| Niagra Scleroderma Support Group |
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| Scleroderma...Living With Hope |
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| Surviving Scleroderma |
To In Memory of Melina
This website created December 1998 by Shanna Bourke
All photos, writings, and graphics © Shanna Bourke 1998, 1999
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