Want to know more about MPS II Hunter? Watch our animated guide.
On this page you can find our animated guide, general information about the condition, latest news, updates and stories and a list of relevant resources and events.
Understanding the condition
What is MPS II?
MPS II, known as Hunter disease, is one of the mucopolysaccharide storage diseases. MPS II was first identified by Dr Hunter in 1917 and includes a spectrum of symptoms from mild to severe.
Mucopolysaccharides are long chains of sugar molecules used in the building of bones, cartilage, skin, tendons and many other tissues in the body. In the course of normal life there is a continuous recycling process of building new mucopolysaccharides and breaking down old ones, which requires special biochemical tools called enzymes.
People with MPS II are missing or are low in an enzyme called iduronate 2-sulphatase, which is essential in breaking down mucopolysaccharides dermatan sulphate and heparan sulphate.
When dermatan sulphate and heparan sulphate are not completely broken down they remain stored in the body, and this causes the symptoms that people with MPS II experience.
Frequently asked questions
Mucopolysaccharides are long chains of sugar molecules used in the building of bones, cartilage, skin, tendons and many other tissues in the body. “Muco” refers to the thick jelly-like consistency of the sugar molecules, “poly” means many, and “saccharide” is a general term for the sugar part of the molecule. In the course of normal life there is a continuous recycling process of building new mucopolysaccharides and breaking down old ones. The breakdown and recycling process requires a series of special biochemical tools called enzymes.
People with MPS II are missing or are low in an enzyme called iduronate 2-sulphatase, which is essential in breaking down mucopolysaccharides dermatan sulphate and heparan sulphate. When dermatan sulphate and heparan sulphate are not completely broken down they remain stored in the body. The symptoms of MPS II are a result of the build-up of dermatan sulphate and heparan sulphate in the tissues in the body. Babies may show little sign of the disease but as more and more cells build up with partially broken down mucopolysaccharides, symptoms start to appear.
Latest resources
The educational journey of individuals with MPS II Hunter Disease in the United Kingdom
This poster shares the findings of a research project that looked at the cognitive variability in patients with MPS II to understand their needs and support requirements in an educational setting.
Hunter Outcome Survey Patient Report 2023
Read the 2023 annual update of the Hunter Outcome Survey (HOS), a large disease registry which has facilitated the collection of data on the signs symptoms and progression of MPS II.
MPS II Hunter disease - information for individuals, parents and families
We know that being diagnosed with a rare disease is life-changing and you can struggle to come to terms with it. Therefore, we have...
Oliver and Sam
Oliver and Sam have Hunter disease because their bodies are missing a special enzyme. It makes their skin cells clog up, causes stiffness of their joints and makes it harder to breathe.
Latest news and blogs
News
Shining a light on the importance of individualised airway management plans
For Rare Disease Day, we shine the light on an important safety investigation report that involved insights from the MPS Society.
27/02/2024
Blog
Going on holiday in an MPS world
Living with MPS, Fabry or related condition can make going on holiday a daunting prospect. I am here to tell you that it's possible.
01/08/2023
Condition
Gene therapy clinical trial for patients with MPS II Hunter opens in Manchester
A new gene therapy clinical trial for patients with MPS II Hunter disease is opening in Manchester.
16/06/2023
Your stories
Story
Of course I love to score goals!
Hear from Tyler who, after a bilateral hip replacement, is fully embracing his passion for football. He shares how sheer determination to achieve his goals rewarded him places in the Danby Rovers and Mencap England football teams.
21/05/2024
Story
When the unimaginable happens
As the world entered a new era, twenty years ago, of joy and optimism, for some life was taking them on a different course, to somewhere...
20/09/2022
Story
Dan's story - The Big Give Christmas Challenge 2021
Dan tells us why support services from the MPS Society are so important and how you can double your donation to fund them this Christmas.
15/11/2021
Need someone to talk to?
Our support includes an active listening service and telephone helpline.