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Hunter Syndrome – After Diagnosis: What Next?

key information

source: Takeda

year: 2020

summary/abstract:

Talking About the Diagnosis

It can be hard to explain the disease to others. You could say that your child has a long-term condition that, depending on the individual’s needs, may require regular healthcare management. You may wish to tell only a few people who need to know, such as family, close friends and key people at school. When talking to your children about Hunter syndrome, you will need to judge how much information to give them without making them anxious. It may be best to give children age-appropriate information in small amounts. Your local MPS society can offer help and support, and your specialist nurse, pediatrician, or family doctor may also be able to advice.

Hunter Syndrome Is Managed by a Diverse Team

Hunter syndrome is managed by a large and varied team of healthcare professionals who specialize in the medical side of the condition (e.g. cardiac, neurological, eye, ear, nose, and breathing symptoms) and specialists who provide supportive care (e.g. physiotherapy, speech therapy, hearing support, dentistry, and behavioral therapy). A family practice physician or pediatrician can facilitate the support from the various members of this ‘multidisciplinary team’, and provide a consistent medical base for you and your family to talk to.

 

 

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