Although you cannot control the diagnosis of MPS I, you do control how the diagnosis impacts you, your child and the rest of your family. Because of the genetic nature of MPS I, the diagnosis and lifelong nature of the disease can introduce many family discussions. Some topics include disease explanations to siblings, genetic counseling, and screening with extended family.
The following suggestions might help you create your family’s plan for coping with MPS I. Many of these guidelines can be tailored in the amount of detail to be appropriate for various ages. As always, we encourage you to discuss all of your questions with your physician to be sure you understand.
Because MPS I is genetic, your other family members may be carriers and may have children affected by MPS I. Making them aware that MPS I may run in your family will give them the chance to have genetic testing. Telling your family can help them understand what you are going through. The more they know about MPS I, the more likely they will be able to help.
Parents of children with MPS I may have to decide how much information to give their affected and unaffected children about the disease. Although there may be a tendency to conceal information from children to avoid causing unnecessary anxiety, it is often best to be as open and honest as possible with aspects of MPS I, such as what caused the disease.
MPS I often requires a team of physicians and specialists and a variety of diagnostic testing, monitoring procedures, and medical visits. It can ease confusion for an affected child and siblings by explaining why the procedure is being performed, who will be doing it, whether or not it will be painful or discomforting, how the medical team will help, and any equipment that might be used.
Children with MPS I and their siblings often don’t know how or what to tell others about the disease. Parents can help their children by suggesting various age-appropriate explanations of what MPS I is and how it affects people. The issue of how to handle any teasing should also be discussed.
The MPS I Registry program, sponsored and administered by Sanofi Genzyme, is a worldwide database that tracks health-related information for people with MPS I, allowing doctors and health care professionals to understand the disorder.