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My Mother's Story

My mother, Gayla Ison Riffle, passed away from complications of this disease on February 5, 2011.

My mother went extremely misdiagnosed for many years since first falling in sometime in 1991. She was put on various medications that were not right for her particular disease. They misdiagnosed her as being a fibromyalgia patient and did not use the recommended proper treatments in the early stages of her disease process due to the misdiagnoses of her actual illness. We did not find out until the November before she passed what the actual cause of her various medical ailments had been all of this time. She spent many days sleeping which I'm sure was her way of dealing with the constant pain that she felt as an effect of scleroderma. She spent many days telling me repeatedly how it hurt her to even put clothes on her body. She would tell me that the material and the weight of it against her skin hurt her tremendously. She would also take the aggression of the persistent pain associated with this disease out on the family by hollering frequently, being controlling and demanding and behaving in irrational manners. Given what I have read about the pain threshold associated with various levels of this disease, I can certainly see where she would use these tactics as a way of dealing with the immense amount of pain that she was in. I have read that other scleroderma patients have also complained of clothing hurting their bodies and that this disease has led to destruction in families due to the aggression associated with the constant pain in the scleroderma patient. About five months before my mom passed, a local Md. gave her some low dosage chemotherapy as a last resort as her inflammation levels were already too high to even tackle and she had also developed various other syndromes associated with scleroderma patients at that point. The first thing to shut down on my mom was the ability of her lungs to function and the amount of oxygen in her lungs would not stay consistent with the body's needs. She was placed under heavy sedation on a ventilator and after a few days eventually passed while still on the ventilator and we all had to say our goodbyes to someone who we all loved so very much. She loved life and would help anyone out. She took many people in who were going through difficult times in their lives and she worked hard to keep a smile on her face. She did not want to leave behind her family or her young seven-year-old granddaughter and had stated that while in the hospital before her final battle with the disease. It is a progressive illness and even though I was told that twenty years was a good prognosis for scleroderma patients as far as their lifespan, I still feel like I was robbed of many good times to be had with my mother. She was only 56 when she left us. I am an actress and would love nothing more than to get involved and raise awareness about this disease. I do believe the fact that it is something so rare it is one of the reasons that she went so heavily misdiagnosed through out the years. While her tests showed a problem, no one had really put on a finger on an exact cause and played a twenty year long guessing game with my mother's ailments until she finally saw a rhuematist who specialized in various connective tissue disorders. He used my mother's condition as an example for this rest of his office staff as a means to show them that his office is not to allow scleroderma patients to progress to the level my mother had. If this disease is treated properly in the early stages then the risks for complications are significantly lowered if any at all. My mother was an unfortunate case. She spent her life smiling and helping others while in constant pain and she feared everything including the death she met from the complications of this disease. I know and believe that she will live on in so many ways and I hope that this story will help others look more seriously into this rare and painful disease so that more awareness and light can be shed on those in the early stages and hopefully reduce the types of complications that my mother had succumbed to. We all loved her so very much. For mom. Vicki Marie Taylor, Savannah Star, and Gayla's entire loving family.

 

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