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Professional Corner

Princess Sarah

by Maxine Bringenberg

Once upon a time there was a baby princess named Sarah. She was the most beautiful baby in all the land, with big brown eyes and a dazzling smile. Everyone in the kingdom agreed that Princess Sarah must surely be the most perfect baby in the world.

The King and Queen were very proud of their baby girl, and showered her with love and attention. At night, when she dreamed of giants and dragons, they would comfort her and gently wipe her tears away and tell her "don't be afraid, my darling princess Sarah. There are no real monsters, only those in your dreams." And she would rest again, safe in the knowledge that the King and Queen would protect her from all evil.

The kingdom prospered, and soon the royal subjects were celebrating the news that another baby would soon be born to the King and Queen. Princess Sarah continued to captivate all who looked upon her, and she was much loved by everyone in the kingdom. Still, the dreams of ghosts and creatures haunted her sleep and the King and Queen would comfort her and gently wipe her tears away and tell her "don't be afraid, my darling Pri cess Sarah. There are no real monsters, only those in your dreams." And always, she would go back to sleep safe and secure in their love.

Soon Prince Kenneth was born, and once again the people in the kingdom rejoiced, for with his sparkling blue eyes and flaming red hair, surely he was one of the most perfect babies in the world. Princess Sarah loved her new brother and delighted in his presence. But, the dreams of serpents and spiders continued and the King and Queen would comfort her, and gently wipe her tears away, and tell her, "don't be afraid, my darling Princess Sarah. There are no real monsters, only those in your dreams." And as before, she would resume her slumber, no longer fearing the faceless monsters.

Then one day, a royal advisor observed that Princess Sarah no longer walked in the fashion of a little princess. She stumbled, and limped, and often refused to walk at all. The King and Queen were terrified and summoned all the finest healers in the kingdom to search for the source of Sarah's discomfort. As time progressed, she grew thin and frail and it became difficult for her to move. But through it all, Princess Sarah never lost her sweet temperament and winning smile and the entire kingdom wept with fear that some unseen terror would take their beautiful princess away.

Finally, one of the healers saw that Princess Sarah had swelling in her joints. Upon examination, it was further observed that the same joints were hot and caused great pain for the young princess. And it was with great chagrin that this healer, a woman of great knowledge and learning, told the King and Queen that their beautiful sixteen month old Princess Sarah was afflicted by a disease of the elderly...arthritis. At first the King and Queen were joyful. "Arthritis?", they cried, "let us give great thanks!". The terror they were feeling about Princess Sarah's future was put to rest and all the subjects in the kingdom were invited to the palace to help them celebrate.

But, the King and Queen soon learned that the road ahead was filled with many obstacles, frustrations, and pain. And though the Princess no longer dreamed of demons and ghouls, the King and Queen would hold her close and wipe her tears away and comfort her and tell her "don't be afraid, my darling Princess Sarah." And then their tears would fall, and they would be filled with despair, because they knew that they were facing a real monster...and that they were not dreaming.

Most fairy tales have a happy ending. But, unfortunately, there are no good fairies or magic spells to defeat the monster known as juvenile arthritis. It attacks without warning, and while modern medicine has provided us with the means to alleviate some of the symptoms, still the monster lurks, ready to rear its ugly head when it is least expected. There is no known cure...yet.

My purpose in writing this is to help educate whoever is willing to listen about the facts regarding juvenile arthritis, a very real and very painful group of diseases that affects an estimated 285,000 children in the US alone!

The story of Princess Sarah is true, for the most part. She is my daughter who developed juvenile rheumatoid arthritis when she was only sixteen months old. Neither my husband nor I had ever heard of children getting arthritis. Most parents of a child with juvenile arthritis will tell you the same thing.

Sarah's story, the hell she's had to go through since she was only 16 months old, is not unusual for kids with arthritis. Unfortunately, most people aren't aware that kids can even get arthritis, and so are unsympathetic when she's feeling awful. Maybe they figure she's faking or something. And once again, this is not unusual among kids with arthritis.

Juvenile arthritis is real and just as painful (maybe more so) than the adult versions. If you're so moved, please help me help the Arthritis Foundation spread the word about juvenile arthritis. A little education goes a long way towards understanding!

The Arthritis Foundation has educational materials and resources available for teachers, scout leaders, parents, health professionals or anyone who would like to learn more about juvenile arthritis. To obtain that information, please contact your local chapter of the Arthritis Foundation. And please help us to spread the word that "kids get arthritis, too."

Maxine Bringenberg

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Last modified: January 26, 2013