CNS – Central Nervous System (the brain and spinal cord)

DLA – Disability Living Allowance. A benefit designed to help with the additional costs that disabilities bring. There are different levels available for both care and mobility aspects.

EHCP – Education, Health and Care Plan. This is a document used to record all a child’s needs in one place. It draws together information from school, parents, the child (if they are able to feed in), health professionals, social workers, etc. It contains aspirations, goals and has legal status.

ERT – Enzyme Replacement Therapy. An infusion over a few hours to replace the missing enzyme that is not manufactured in Hunter and other MPS diseases.

GAGs – glycosaminoglycans or long chain sugar molecules, otherwise known as mucopolysaccharides. In the MPS diseases, these build up throughout the body due to lack of an enzyme that usually deals with them.

IDDD – intrathecal drug delivery device. The theca is a membrane that encloses the brain and spinal cord, and also contains cerebrospinal fluid. It is the blood brain barrier, protecting the brain from other infections within the body that could potentially be harmful. The IDDD is a special portacath which instead of feeding into the bloodstream is inserted into the theca so that it can be used to deliver medicine to the brain which cannot pass through the blood brain barrier.

Lineogram – contrast dye is injected into the portacath while under x-ray, to show any problems in the line.

Portacath (port) – this is inserted under the skin, usually in the chest or under the arm, and feeds directly into a vein. It is accessed by a special needle (called a gripper needle) and means that medicine/infusions can be given without the need for a cannula to be put in each time.

Portage – system of home visits to work on development skills in early years. You can find your nearest service at the National Portage Association.