Coping and support
Joining a support group for parents of children with Hunter syndrome can be a great way to obtain practical information, daily living strategies and encouragement from other parents in similar situations to your own. Ask your doctor if there's a group in your area.
The intense supervision that may be needed for your child can cause you and other caregivers to become physically, mentally and emotionally exhausted. If respite care is available, take advantage of it so that you can have a break and be more effective in the long run to meet the day-to-day challenges of caring for your child.
Check with your county and state for resources that may be available to you as a parent of a child with special needs.
Letting others know
Due to a narrow airway, people with Hunter syndrome often have difficulty receiving a breathing tube (being intubated) during general anesthesia. You may wish to note this on child care or school forms so that emergency personnel can be alerted to this fact, in case your child has an emergency and you're not there. An experienced anesthesia specialist (anesthesiologist) should perform the intubation of a person with Hunter syndrome.
Hunter syndrome is a genetic disorder. Talk to your doctor or a genetic counselor if you're thinking about having children and you or any members of your family have a genetic disorder or a family history of genetic disorders.
If you think you might be a carrier, genetic tests are available. If you already have a child with Hunter syndrome, you may wish to seek the advice of a doctor or genetic counselor before you have more children.
Dec. 10, 2015
- Mucopolysaccharidoses fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/mucopolysaccharidoses/detail_mucopolysaccharidoses.htm. Accessed Oct. 10, 2015.
- Mucopolysaccharidosis type II. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/mucopolysaccharidosis-type-ii. Accessed Oct. 10, 2015.
- Wynn R. Mucopolysaccharidoses: Clinical features and diagnosis. http://www.uptodate.com/home. Accessed Oct. 10, 2015.
- Mucopolysaccharidosis type II. Genetics and Rare Diseases Information Center (GARD). https://rarediseases.info.nih.gov/gard/6675/mucopolysaccharidosis-type-ii/resources/1. Accessed Oct. 10, 2015.
- Mucopolysaccharidosis type 2. Orphanet. http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=en&Expert=580#. Accessed Oct. 10, 2015.
- Kumar V, et al. Genetic disorders. In: Robbins and Cotran Pathologic Basis of Disease. 9th ed. Philadelphia, Pa.: Saunders Elsevier; 2015. http://www.clinicalkey.com. Accessed Oct. 10, 2015.
- Wynn R. Mucopolysaccharidoses: Complications and management. http://www.uptodate.com/home. Accessed Oct. 10, 2015.
- Hoecker JL (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 15, 2015.
- Litin SC (expert opinion). Mayo Clinic, Rochester, Minn. Oct. 15, 2015.