Rare Disease Patient Videos

The following videos provide an insight into the lives of people affected by rare diseases and some of the issues they have to face in getting a diagnosis and accessing the care and support they need.

Matthew's video

Matthew tells us about seeing his father’s experience of Huntington’s disease and his subsequent decision to get tested for the condition himself, and how this inspired him to set up his own organisation for young people affected by Huntington’s.

Matthew’s organisation, the Huntington’s Disease Youth Organisation (HDYO), is due to launch at the end of this year.

For further information on Huntington’s disease, please see the Huntington’s Disease Association - http://www.hda.org.uk/

Alison's video

Alison has Behcet’s syndrome and tells us about her delay in getting a diagnosis, her experience of living with a rare disease and how it can be difficult to maintain a balance between a work and personal life and management of her condition. She emphasises the need to raise awareness of rare diseases among the public and professionals, and the benefits that come from having a good support network.

For more information on Behcet’s syndrome, see the Behcet’s Syndrome Society - http://www.behcets.org.uk/

Fer's video

Fer tells us about her daughter Natalie who had MPS III Sanfilippo A disease. She talks about their experience of getting a diagnosis of this rare condition, and describes the progression of the disease and the impact it had on the family. Fer tells us how little information she was provided with on learning her daughter had this condition, and the massive support that eventually came when she found the MPS Society.

 

For further information on Sanfilippo A disease and other mucopolysaccharide diseases please visit the MPS Society website - http://www.mpssociety.co.uk/

Rare Disease UK are grateful to PR company Waggener Edstrom Worldwide for enabling the production of these videos.