We exist to improve the lives
of everyone affected by epilepsy

Contact us

New Anstey House

Epilepsy information?

Visit the information section of our website, call the UK Freephone helpline on 0808 800 5050 or use the email helpline.

Head office address

Address
New Anstey House
Gate Way Drive
Yeadon, LEEDS
LS19 7XY
United Kingdom map

  • Phone: 0113 210 8800 (UK) or +44 (0)113 210 8800 (international)
  • Fax: 0113 391 0300 (UK) or +44 (0)113 391 0300 (international)
  • Email: epilepsy@epilepsy.org.uk

Press office for journalists

  • Press office phone: 0113 210 8870 (UK) or +44 (0)113 210 8870 (international)
  • Press office email: press@epilepsy.org.uk

Getting to head office

Epilepsy Action's headquarters are in Yeadon, nine miles north-west of Leeds city centre.

By car

Yeadon is on the A65 Leeds to Ilkley road.  Epilepsy Action's headquarters are on Gate Way Drive, off Whack House Lane.

By train

The nearest railway station is at Guiseley (no taxi rank, local taxi numbers) 1½ miles away.

Leeds city centre station (nine miles away) is served by direct trains from most major cities across the UK and is around 30 minutes away by taxi (rank at the station entrance, fares around £20).

By cycle

Use the Cycle Streets journey planner to find the best route to cycle to our head office. 

By air

Leeds-Bradford International Airport is only 2½ miles away. Direct scheduled flights are available to/from many British and European cities.

By bus

Yeadon is served by a number of bus routes. The easiest way to find the right bus to our offices is by using the Metro journey planner.

  • To/from Leeds city centre and Kirkstall: buses 33 and 33a
  • To/from Harrogate: 747
  • To/fron Otley: 33a
  • To/from Horsforth railway station and Headingley: 97
  • To/from Bradford: 737 (via Shipley) and 747 (both via Greengates)
  • To/from Guiseley: 33, 33a, 97 and 737

Comments: read the 4 comments or add yours

Comments

Some of the information is helpful but there does not seem to be much organized for people in Northern Ireland and I cannot find a contact number for the Northern Ireland office to make any enquiries or have a point of contact to ask for advice etc.

Submitted by Rosemary Bell on

Trying to find simple information what insurance covers seems to be non existant. It should be there on a page that so people can readily see what it covers instead of logging in. Secondly, logging in can be a right pain if the system doesn't work. Has anyone else had probs?

Submitted by peter on

We lost our son Ollie following a 3 hour long seizure on Christmas day :(
Ollie was 2 years and 8 months old.

https://www.facebook.com/pages/Ollie-Johnson-is-living-with-Dravet-Syndr...

Please take some time to read this, and please share to help spread awareness of Dravet Syndrome, thank you xxx

What is Dravet Syndrome?

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge.
Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:
behavioural and developmental delays, movement and balance issues, orthopaedic conditions,
delayed language and speech issues, growth and nutrition issues, sleeping difficulties, chronic infections, sensory integration disorders, disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating).
Children with Dravet syndrome do "not" outgrow this condition and it affects every aspect of their daily lives.

Unless a cure or better treatments for Dravet syndrome and related epilepsies are found, individuals with these disorders face a diminished quality of life.
Current treatment options are extremely limited and the prognosis for these children is poor.

We need to raise awareness of
Dravet Syndrome and also continue raising funds to support others, and money also needs to go into research to hopefully one day find a cure.

Here is a list of secondary issues related with Dravet Syndrome~

While severe epilepsy and developmental delays are the primary problems of children Dravet Syndrome, a number of other significant health problems are associated with this disorder.
Though there is variability from child to child in the presentation of symptoms, some secondary conditions are quite common. Appropriate care of children with Dravet Spectrum Disorders must include the identification and management of these conditions to achieve optimal health and quality of life.

Autism spectrum characteristics are reported in more than half of people with Dravet syndrome and parents of about 25% of individuals with Dravet syndrome report that there has been a formal diagnosis of autism secondary to the Dravet syndrome. Communication impairments are observed in at least 85% of these individuals.

Signs of dysautonomia; or problems with automatic body functions such as temperature regulation, sweating, heart rate, blood circulation and digestion; are reported to occur in more than 60% of individuals with Dravet syndrome.

Cardiovascular problems have been reported in some people with Dravet syndrome, including rapid or slow heart rate, irregular heartbeat and abnormalities of the structure of the heart. It appears these problems may occur more frequently in people with Dravet syndrome than they do in the general population.

Growth and nutrition concerns may be observed in up to about 60% of children with Dravet syndrome. These may include failure to thrive (underweight, slow growth, small stature), osteopenia (poor bone density), scoliosis (curvature of the spine), problems with eating, appetite or with the absorption of nutrients, or difficulties with the process of puberty.

Coordination and orthopedic disorders are a concern reported by up to 80% of families of people with Dravet syndrome. Symptoms may include gait disturbance such as ataxia and crouch-gait. Pes planus (flat feet) and pes valgus (out-toeing) foot deformities are common and many children have hypotonia (poor muscle tone), hypertonia (tight muscles or spasticity), or hypermobile (loose) or lax joints.

Infections and immune dysregulation are a common problem. Frequent infections of the respiratory tract (ears, nose, sinuses, throat, bronchial tubes and lungs) are reported in many cases of people with Dravet syndrome. Frequent infections of the digestive and urinary tracts (stomach, intestines, bladder and kidneys) can also be a problem. Diagnoses of specific immune abnormalities have been reported in up to 14% of patients.

Sleep disturbances that are severe, persistent, and difficult to treat are common in children with Dravet syndrome. Fifty to 85% may have disruptive nocturnal seizures. Sleep apnea is now being reported in as many as 17% of cases. Other sleep disturbances that are frequently reported are insomnia, premature awakening and night fears.

Dental health can be a concern for people with Dravet syndrome. Delayed tooth eruption (20%) and malocclusions (13%) and bruxism, or grinding of teeth (21%) are common. Other issues reported with more moderate frequency are missing, extra or malformed teeth and o

Submitted by Sarah on

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