Keeping kids connected
Some people prefer talking about their personal problems face-to-face, while others are more comfortable doing so in private—especially when the topic is sensitive. That's why the Center for Young Women's Health (CYWH) at Children's Hospital Boston created online chat rooms where adolescent girls suffering from endometriosis and other gynecologic conditions can connect and get support while maintaining anonymity.
Once a month, young women between 13 and 22 visit CYWH's Web site for an hour-long chat about endometriosis, which occurs when tissue similar to the inner lining of the uterus grows outside its normal location. It can be intensely painful, especially during menstrual periods, and can cause infertility.
When a participant signs on to chat, she chooses a nickname and a welcome message appears with a list of her fellow chatters. She can then post questions and talk about her disease, how to deal with the pain and different medications and their effects.
"The chat room is emotionally safe and allows the girls to talk in the privacy of their own homes," says Phaedra Thomas, RN, BSN, nurse coordinator in the CYWH.
Thomas and Marc Laufer, MD, chief of Gynecology, act as moderators. They get the chats rolling, clarify misunderstandings and provide general answers, emotional support, online resources and coping tips. "We don't want the chat rooms to be a medical consultation," notes Thomas, "but we do want them monitored by a doctor and nurse so the girls can get accurate information."
Allison Amore, 22, a former CYWH intern, joins Laufer and Thomas during the chats to offer the girls additional advice on how to talk to others about their condition. After being diagnosed with endometriosis at 14, Amore has had to cope with abdominal and back pain, fatigue and lack of understanding by others. "Often, people don't believe that you're in that much pain," she says. "They think you're just seeking attention."
Allison's condition is now under control, but she knows she will always have the chat group to turn to. "It's definitely invaluable, especially for younger girls who need a place where they can talk anonymously and get straight answers," she says.
The CYWH also runs chat rooms for Mayer-Rokitansky-Kuster-Hauser Syndrome, in which women have a short or nonexistent vagina, no cervix and a partial or absent uterus; Polycystic Ovary Syndrome, a hormonal problem characterized by irregular menstrual periods, increased hair growth, acne and, often, weight problems; and occasional chats about nutrition by request. Visit www.youngwomenshealth.org/chat.html for more.
Deandra Howard always planned on being a dental hygienist, but at the age of 18, while still in high school, she became pregnant with her son Josiah. A daughter, Jasani, followed a year later, and all plans for a career—and of finishing high school—quickly came to an end.
But thanks in part to a support group for teen mothers sponsored by the Children's Hospital Primary Care Center and Young Parent's Program (YPP), Deandra, now 20, is a "Proud Mama" and once again making plans for the future.
Called Rowing Strong, Rowing Together (RSRT), the group introduces lower income young mothers to rowing as a way of fostering personal development and physical activity, with the ultimate goal of boosting their self-esteem and decreasing the isolation many of them feel.
RSRT started in Holyoke, Mass., and was brought to Children's in 2004 by social worker Jennifer Valenzuela, LICSW, MPH, and Matt Buman, MS, both from the YPP, who named the team the Proud Mamas. In the program's first year, there were seven young women on the team; this year the number doubled. They ranged in age from 16 to 23 and came mostly from the Boston neighborhoods of Roxbury, Mattapan and Dorchester.
RSRT covers the young mothers' transportation and babysitting costs so they can focus only on rowing when they're on the water. They learn rowing etiquette and commands and how to carry the boat properly. In the summer, they take part in the annual Young Parents Regatta, a 2,000-meter race that pits them against other RSRT groups.
"The competition is a great motivational tool that gives them a goal and a chance to compete in front of their family and friends," says Valenzuela. And this year, the Proud Mamas sampled the sweet taste of victory when they won the regatta.
The success Deandra has found on the water has helped her get back on track. She and her children recently moved into their own apartment, she has an internship as a dental assistant and hopes to finish her GED and enroll in college, where she might join the rowing team.
"This program relieves stress and keeps me focused during the week," says Deandra. "I enjoy being on the water, in the fresh air and exercising with people I can relate to."
Children's Hospital Boston has launched a brand new version of its official Web site, www.childrenshospital.org—the site's first major content and design overhaul since 2001.
New and noteworthy:
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A fresh, new look and feel, improved navigation, an updated research site and hundreds of pages of new content.
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Two virtual tours of Children's—one for children given by the animated character Arthur the Aardvark, and another made up of 360° rotating photos of locations throughout the hospital.
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An enhanced "For Patients & Families" section with comprehensive information on preparing for a visit to Children's.
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A home page that will be regularly updated with the latest from our patient care, research and giving areas.
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A searchable directory of Children's world-class clinical services so visitors can quickly access detailed department and disease information.
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An expanded section for health professionals, with resources for referring doctors and information on residencies, fellowships and continuing education programs.
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Archived webcasts of Children's most innovative surgeries.
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A multimedia library featuring visual and audio information on health conditions and procedures.
Check out all of this and more at www.childrenshospital.org, then bookmark us and come back often for the latest and greatest from Children's Hospital Boston.
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All kids want to fit in, but what do you do when you can't eat most of the foods your friends eat? It's a question Tracey Keegan asked when her daughter, Marina, was diagnosed with celiac disease at 19 months old.
Celiac is an inherited chronic illness that damages the small intestines so they can't tolerate the protein gluten, which is found in grains such as wheat, barley and rye. Since that covers nearly everything in the average cupboard, eating becomes a challenge. "I remember walking into my kitchen and feeling that every food in there was an enemy out to get my kid," says Tracy.
So to help her daughter and others with the disease, Tracy teamed up with Alan Leichtner, MD, director of the Celiac Disease Program at Children's Hospital Boston, and Laurie Higgins, a former Children's nutritionist, to start the Celiac Support Group.
Thirteen years after it started, the group is thriving. It has taught more than 300 patients and families to manage a gluten-free lifestyle through a variety of resources, including a manual, written by parents, with suggestions for identifying gluten-free products, tips for a gluten-free kitchen and much more; a quarterly newsletter; and invitations to special events that feature guest speakers and food vendors offering the latest news on the disease and gluten-free products.
There's also a summer barbecue and winter holiday party each year to create normal social experiences for the kids. "It gives families a place to put their guards down and let their kids eat without asking questions," says Tracy.
Marina, who's now 16, hasn't missed a party yet, and writes articles for the newsletter. "The support group really helped me learn that there were so many other foods I could eat and that I'm not the only one who has this," she says. "It helped me realize that having this disease isn't the end of the world."
