Juvenile Batten's Disease

SeeAbility provides a specialist nursing & social care service for young adults who have Juvenile Batten's Disease at Heather House in Tadley, Hampshire.

The group of diseases known as Batten's disease are progressive degenerative metabolic diseases that occur in children and adults.

Juvenile Batten's Disease has an onset between age 5 and 9 and is characterised by developmental regression, vision loss, seizures, loss of motor abilities and dementia. Life expectancy is limited to between late teens and mid thirties, although this is increasing all the time.

SeeAbility has the experience and expertise to offer information, advice, training and consultancy services for families, carers and other professionals.

SeeAbility regularly updates two documents with experiences gathered at Heather House to provide narrative evidence of current  treatment and drug regimes used to support people with Juvenile Batten's Disease:

• Guidelines About The Later Stages of Juvenile Batten's Disease 
• Treatment Guidelines For Symptom Crisis In Juvenile Batten's Disease   

SeeAbility undertook some research in 1999 into the social care needs of young people with Juvenile Batten's Disease that guided the development of the practice at Heather House.  To look at the report from this research, please click on the link below:

An evaluation of the findings from the original research report above and how these have been implemented within the service provision at SeeAbility Heather House was undertaken during 2005. The report from this evaluation was published in July 2005 and can be seen by clicking on the link below:

• SeeAbility Heather House - Developing a New Model of Care

If you would like further information or advice about supporting people with Juvenile Batten's Disease, please contact Sarah Kenrick - Registered Manager at Heather House on 01189 817 772 or via e-mail at s.kenrick@seeability.org