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Quarterly clinics draw patients from across U.S. to meet with specialists
By Cheryl Powell
Beacon Journal medical writer
Published on Monday, Nov 16, 2009
''Why did God make you little?''
Standing proud at 4-feet, 2-inches tall, Annie Yahner didn't hesitate with her response when her 5-year-old daughter recently asked her that question.
''God made me little,'' she said confidently, ''because I need to help other people who are little.''
Yahner, a registered dietitian, is an integral part of the specialized team that cares for patients of small stature at the Regional Skeletal Dysplasia Center of Akron Children's Hospital.
Skeletal dysplasias are bone and cartilage disorders that affect the growth and development of the skeleton and result in shorter-than-average stature, typically 4 feet, 10 inches or less.
Four times a year, patients of all ages with dwarfism travel from throughout the country to meet with the Akron Children's team for a comprehensive exam, which includes a 1-1/2-hour consultation, testing, access to specialists and development of a treatment plan.
Dr. Richard Pauli, a national specialist in skeletal dysplasias, comes to Akron from Wisconsin with a genetic counselor to help run the two-day clinics every quarter.
Dr. Dennis Weiner, chairman of the Department of Orthopedic Surgery at Children's, staffs the clinic and provides follow-up care and interim appointments as needed.
Yahner, 42, became a patient at the clinic seven years ago, when she was planning to get pregnant. At the time, she had recently earned her degree in dietetics and nutrition from the University of Akron.
She recalled that her former obstetrician/gynecologist criticized her when she said she wanted to have a baby with her husband, who is of average height.
''How could you be so stupid?'' she remembered the doctor asking. ''Why would you want to bring someone into this world who looks like you? If you're dumb enough to get pregnant, I will not be responsible for your prenatal care.''
Her experience at the skeletal dysplasia clinic was much more supportive and encouraging.
''I was so impressed because they treated me so well,'' she said. ''They treated me like a human being. They were amazing. I decided, 'I want to stay here.' ''
At the end of her appointment, Yahner didn't leave.
''Do you have any questions?'' Pauli asked.
''No,'' she replied, ''but I have a proposal for you.
'' . . . You guys need me. You just don't know it. You need me in your clinic.''
A year later, the hospital hired her to work in the clinic as its nutritionist.
''It's wonderful,'' Yahner said. ''I'm finally using my dwarfism to help somebody else. It's finally working for me instead of against me.''
Since joining the clinic, she has given birth to two children, both of average height.
Specialized care is rare
As Yahner knows firsthand, finding comprehensive medical care can be a big problem for little people.
Nationwide, there are only about 15 skeletal dysplasia clinics, according to the Little People of America's online resource list.
Along with short arms and legs, patients with one of the estimated 300 or more types of skeletal dysplasia can have a variety of health problems, such as spine disorders, orthopedic problems, cardiac defects, neurologic disability and ear, nose and throat problems.
About one in every 10,000 to 20,000 Americans has dwarfism, according to the Little People of America, a national nonprofit group dedicated to providing information and support for people of short stature.
''The reality is that this is a very, very specialized area,'' said Pauli, a professor of pediatrics at the University of Wisconsin-Madison and director of the Midwest Regional Bone Dysplasia Clinics.
''What we can provide that they can't get elsewhere is a plan of action — being able to prioritize what concerns may be present, what do we need to do to make sure that individual or child is maintained as healthy as possible with as few complications as possible.''
Full evaluation
Eight years ago, Weiner worked with Director of Medical Genetics Dr. Haynes Robinson to start the clinic at Akron Children's because he was seeing more patients with short stature in his orthopedics practice.
Weiner contacted Pauli and persuaded him to join the clinic's staff as a visiting physician.
''It's the most extensive evaluation you can find anywhere in North America,'' Weiner said.
After each appointment, the clinic gives the family and the patient's primary-care doctor an extensive report that includes recommendations for follow-up tests and care. The staff also is available for phone consultations between appointments.
''With skeletal dysplasia patients, we're a pretty high-maintenance crowd of people,'' Yahner said. ''It's an ongoing communication back and forth.''
Jerome and Nicole Mancini were searching for options for specialty care for their 5-year-old son, Vinny, after recently moving from California to North Carolina.
A mutual friend recommended the family connect with Yahner through Facebook. Yahner and Vinny have the same form of skeletal dysplasia, known as cartilage-hair hypoplasia.
After chatting online and then talking with Yahner several times, the Mancinis decided to make the seven-hour drive to Akron for an appointment this month.
''I think we've gotten more information in this appointment than we have gathered in all his five years,'' his mother said afterward. ''I was very impressed.''
When the appointment was done, Yahner talked with the family and shared her experiences, as well as words of encouragement for Vinny.
''We're people, too,'' Yahner said. ''We're just in little bodies. The sky is the limit.''
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com.
''Why did God make you little?''
Get the full article here.
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