FAQ - Coffee Subscription
What causes MPS IX?
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 IX are low in an enzyme called hyaluronidase which is essential in breaking down mucopolysaccharide hyaluronan. When hyaluronan is not completely broken down it remains stored in the body. The symptoms of MPS IX are a result of the build-up of hyaluronan in the tissues in the body. Babies may show little sign of the disease but as more and more cells build-up of partially broken down mucopolysaccharides, symptoms start to appear.
How common is MPX IX?
It is estimated that nearly 6% of the UK population (around 3.5million people) will be affected by a rare disease at some point in their lives. A single rare disease may affect up to about 30,000 people however the vast majority of rare diseases affect far fewer than this.
As of 2001, only one case of MPS IX had been reported.
How are people with MPS IX affected?
For people with MPS IX symptoms may include mild short stature, frequent ear infections, facial changes including flattened nose bridge and a cleft palate. Development of soft-tissue masses has been noted but joint movement and intelligence is normal.
Treatment options for people with MPS IX
More information on supportive care treatments for people with MPS diseases can be found in the treatments section.
Research and Clinical trials for people with MPX IX
For an up-to-date list of current UK based trials taking place visit Be Part of Research (resource provided by the National Institute for Health Research). For an international search visit Clinical Trials (resource provided by the U.S. National Library of Medicine). This resource provides information on trial status including recruiting, completed or withdrawn and worldwide trial locations. To find out more about past or current trials speak to your doctor and learn about the risks and potential benefits.
Living with MPS IX
The MPS Society is the only UK charity at the forefront of supporting people and families affected by MPS and related diseases. Our extensive support services offers you a wide range of support and resources. The team can advise and sign post you to adequate needs-led support and services in your local area as well as social care, home adaptions, education and much more. The support team can visit you in your home and provide you with vital support and includes an Advocacy Officer based at Belfast City Hospital supporting members in Northern Ireland.
Get involved and support us in the community, volunteer or support fundraising; we are a small charity but with your support we can continue to offer a highly valued and essential service.