| July 30, 2001 Coping with arthritis:
Sufferers and families join to learn more about the disease Laura Collins of Quincy was 22 when she first noticed pain and swelling in her left knee. |
| A bank teller without health insurance, she refused at first to see a doctor because she didn't recognize the seriousness of the problem. It was the first indication of a disease that has transformed her life and career and will steadily worsen for the rest of her life. Collins has rheumatoid arthritis - a disease more serious than the commonly known osteoarthritis that is associated with aging. In the United States, 8.4 million people between the ages of 18 and 44 have arthritis and millions of others are at risk for developing it, according to the Arthritis Foundation. There are nearly 300,000 children in the United States with some form of arthritis or rheumatic disease. On Saturday, 500 people met to learn more about the disease and its treatment during the Northeast Regional American Juvenile Arthritis Organization conference at the Sheraton in Braintree. The event included lectures and workshops. It also provided the opportunity for young people with the disease to meet and socialize. "Arthritis camp and this conference is the only place I am truly happy," said Liana Walters, 16, of Pennsylvania, who has a form of arthritis that makes her legs and arms overheat and "burn" with pain. "I am having a great time," she said. "I get to see my friends. We have a weird bond. It is an understanding, not an issue." Children with arthritis are often in pain and can tire easily. Parent Trish Leahy Murtagh of Canton said her daughter, Maeve, 7, was diagnosed at the age of 21/2, but it took four to six months before a doctor could figure out what was wrong. Maeve's first symptoms were swelling in her fingers, knee and hip. The period of not knowing what was wrong with her daughter was a time of "extreme anxiety and worries," said Murtagh. She said that when Maeve was finally diagnosed, she was confused and uncertain about her daughter's future. "I did not know whether she would be able to dance or play sports. And it is always changing, (I'm) never sure what will happen." Although Maeve occasionally wakes up "very stiff," she stays active to help keep the joints capable of moving through a full range of motion, said Murtagh. "Maeve is a very happy and sensitive kid," she said. "Except for the medications, she does not think she is different." Collins, the Quincy woman, who has now been living with the disease for 14 years, said she's doing well. "I have a great team of doctors at the New England Medical Center in Boston that are very helpful and supportive," she said. She said life with arthritis has not always been great. "It hit hard emotionally. I learned it would spread," she said. Collins cannot completely stretch her arms. Her right ankle does not have a full range of motion, and is sometimes painful, requiring the use of a brace. She has had the joint replaced in her right ring finger, and intentionally fused her left wrist to alleviate pain. Her wrist cannot go up and down. Her left knee was replaced and she had surgery on her right hip. She works at home, creating jewelry, which she sells at fairs. Jewelry-making gives her flexibility if she needs time off, and the work is a distraction from pain, she said. "And by keeping the fingers limber and the strength up, it helps keep the pain away," she said. |
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