July 22, 2004 - Dusty's Place offers hope and a smileBy MICHELLE FLOOD, Staff writer
Dusty's Place is a safe place where women with a rare disease, called scleroderma, can go for support and hope and information about their debilitating disease.
Scleroderma is a complex disease that affects mostly women. It is estimated that as many as 300,000 Americans suffer from some sort of the disease.
According to the Scleroderma Research Foundation, the word scleroderma means hard skin. This is the characteristic feature of the disease - the hardening and scarring of the skin. In simple terms, the disease causes the overproduction of collagen in the connective tissue. Collagen, a protein, is responsible for keeping skin and organs supple. When collagen is overproduced, as in scleroderma, tissues in the body become hard and immobile. The excessive build-up of collagen is called fibrosis.
The foundation states that there are two major types of scleroderma, localized and systemic. The localized affects only the skin. The systemic form affects the skin and internal organs. Scleroderma is often categorized as an autoimmune disease. The research foundation says that while there is an autoimmune dimension to scleroderma, it does not fit the traditional model and is notoriously resistant to most immunosuppresant therapies.
According to the Scleroderma Research Foundation, "No therapies exist yet, ... , to halt or reverse the disease process. Patients continue to experience the pain, deterioration, and debilitation of this cruel disease - and many patients die."
One woman, Kim Leal, 43, of Shingle Springs, couldn't accept that prognosis after learning she had scleroderma. "I couldn't go to the support groups because I couldn't buy into what they were saying. I wanted to live," Leal said.
"I first became ill at age 34 and was misdiagnosed for two and a half years. She then received the diagnosis that she had scleroderma. She had started researching the mind-body connection in illness and looked into alternative types of medicine. "I combined eastern medicine, hypnotherapy and naturopathy with the western treatments that I was already receiving. Once I addressed some emotional issues, I started to improve," said Leal. "I wanted to get well and was willing to try anything that might work in both western and eastern medicine," Leal said.
"My symptoms subsided and eventually reversed themselves. I do not consider myself in remission. I consider myself cured," Leal emphatically declared.
She felt she should do something because she got well. "I contacted agencies that did research and no one wanted to talk with me because of the alternative care connection. Even the scleroderma support groups didn't want to talk with me. The level of resistance that I received completely shocked me. Some wouldn't even believe I had scleroderma. But I felt I had something to share with other women suffering from scleroderma," Leal said.
She knew there were other women that could benefit from her knowledge and she founded Dusty's Place.
Dusty's Place is a resource center that educates and promotes public awareness to the benefits of combining western medicine with complementary and alternative medicine to heal scleroderma. Currently an 18 month research program for women with scleroderma is underway at no cost to the patient. All the women continue to work with their own doctors throughout the study, Leal stressed.
There are three main components to the research program being conducted at Dusty's Place. There is a counseling component, natural therapy component and medical component.
Traditional naturopath, Angela Burr-Madsen, 62, of Gateways Health Care in Shingle Springs, provides the natural therapy component in the research program. As part of the natural therapy, many modalities are employed. An individual protocol is written for each woman. Dietary changes and different supplements and herbs are recommended to the patients on an individual basis. Homeopathic remedies and massage therapy is employed. Vibrational kineseology and energetic nervous system re-patterning is used. Flower essences and emotional stress release work are also used in the program, said Burr-Madsen.
Burr-Madsen acknowledges that she was one of Leal's health care providers, in her quest to wellness. She have been involved with Dusty's Place, since the beginning.
There are four women in the present research group. They are Mary, 51, from Santa Rosa; Susan, 48, from Inverness; Karen, 50, from San Ramon; and Joan, 54, from Grapeline, Wash. The women all have remarkably similar stories, even though their symptoms vary. Many of women met Leal through different scleroderma support groups that she spoke at. Others heard about Leal from friends.
Mary has the systemic form of scleroderma. She has what is called CREST syndrome, which has limited skin involvement with systemic features. Her biggest problems from scleroderma was irritable bowl syndrome, which causes digestive tract problems and Raynaud's phenomenon, where cold causes extreme pain. "I have been suffering from the disease for 20 years," she said. The IBS was so unpredictable that I couldn't travel and could never go out to dinner. Now, I travel. I can go out to dinner and don't have to worry anymore. It used to be torture when the fog came in. "When I caught a cold it used to turn into pneumonia or bronchitis and now a cold just lasts a week," said Mary.
Susan has had scleroderma for five years and had a very fast onset of the disease. She was a nurse and had no idea what it was like to be the one really ill. "I would be so fatigued that it was a major undertaking just to make it to the support group. My husband had to go places with me because I couldn't take myself," she said. "I was turning to stone. My hands couldn't open jars and I was becoming more and more uncoordinated. I had to cut my hair short because I couldn't get my hands up to comb it. There was nerve involvement and I couldn't walk. I loved to play the piano and was last able to play in 1999, she said. Now, I can play again and move my fingers, where they were stuck before. As I am recovering it's like coming out the other side. It's such a joy to get back the things I lost, I appreciate things so much more," Susan said.
Karen was only recently diagnosed with scleroderma. "I have been a fitness and health freak all my life," Karen said. "I had been misdiagnosed for quite a while. After the diagnosis my prognosis was five years and they told me to go to a support group. After going to the meeting I became so depressed that I went to bed for three days. Scleroderma impacts your life in every way, she said.
"I couldn't walk or grip anything. I couldn't comb my hair or even open my make-up containers. At one of the support meetings I met Kim and Joan, and they talked about Dusty's Place. It was the first time someone offered hope. There was a cold chill in the air when Kim talked about getting better," Karen said. "But I'll try anything, I want to survive."
Two weeks ago Karen woke up and couldn't move. It felt like her back was on fire. She talked with Leal and was told about the importance of using prescribed medications.
Joan's scleroderma was first thought to be carpal tunnel syndrome. "Things got so bad that it was like trying to do things with both hands in a sling," said Joan. "I couldn't drive or use scissors. My skin became so hard that it would split. One of my doctors told me to write my will."
After Dusty's Place Joan said, "Now my skin has become so much softer and I can drive again."
All the women commented and laughed about when their recovery started and how excited they were to see wrinkles on their faces. "My face was so hard and tight that you couldn't even tell I was smiling," one said. Another added that she was so happy because, "now when I smile I have all these lovely wrinkles."
Susan spoke for the women when she talked about what an inspiration Leal has been to all of them. "When you're given a diagnosis that you can't get better, and you meet someone who has, you've been given the gift of hope," Susan said. All the others concurred.
"We're fighters," Mary added.
For more information about scleroderma and Dusty's Place you can reach Leal at 672-2473. For more information about Gateways Health Care and traditional naturopathy you can contact Burr-Madsen at 677-3247.