Newsline Volume 33, Number 4

A Story of One Teenager's Acceptance of a
Complex Medical Condition

By Gloria Klaesges, Parent-to-Parent Coordinator, Family TIES of Massachusetts

The teen years are a confusing time for every adolescent, with a great number of challenges, emerging skills, and self-exploration. Factor in a rare complex medical condition affecting practically every body system, and that can equal a Perfect Storm waiting to happen.

Let me introduce you to Tiffany, and how we helped her to understand she truly is not alone in this world. Tiffany was born with a rare genetic condition called Hurler Syndrome, also known as Mucopolysaccharidosis Type I. This metabolic disorder results from the absence or malfunctioning of lysosomal enzymes needed to break down molecules called glycosaminoglycans - long chains of sugar carbohydrates in cells that help build bone, cartilage, tendons, corneas, skin and connective tissue. People with this condition either do not produce enough enzymes to break down these sugar chains, or they produce enzymes that do not work properly. The result is permanent, progressive cellular damage which affects appearance, physical abilities, organ and system functioning, and, in most cases, mental development.

Imagine trying to explain this to a child as she is growing up, using terms that she can comprehend so that she understands her challenges? Tiffany emerged from her tween years with increased anxiety, which devolved into downright anger. We struggled in explaining to Tiffany how her condition affects her body and helping to develop coping skills she will need for adulthood. She would often make statements to us like, "I'm a freak," "No one is like me," "I don't understand why I'm so short," "Why can't I read," and "I want to go to Heaven." These increasingly intense statements broke our hearts.

Nothing seemed to help ease her frustration or anger, until we learned that the National MPS Family Symposium was coming to Boston. This was our big chance, Tiffany's first opportunity to spend time with other teenagers who looked, talked, walked or wheeled, and shared many of her challenges and necessary medical treatments. This was the missing link for her. Tiffany needs to know others who understand this condition in the same ways that she does. She needs friends to talk about her feeling and fears, teens who understand her condition in the same ways she does. The most valuable lesson I learned that weekend was that my child, even though a teenager, has many of the same needs as I do as a parent. Talking with other parents has always been the key for me; having parents to lean on who have been in my shoes is what has helped me through all the rough times. Now, Tiffany has friends who understand her in a way that we are not capable of, and those days of heartbreak and rage have all but disappeared.

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Family TIES of Massachusetts is a parent-led program that offers information and referral services through its six Regional Parent Coordinators. To find community-based programs and resources, you can make initial contact through our toll-free line, 800-905-TIES (8437), or visit us at, www.massfamilyties.org.
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