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Category: Special Needs

This category holds information and links on illness and disability that you may find helpful or informative. We have come across each area in our journey

Purple Day

Purple Day

Purple Day – 26th March

A day to raise awareness of epilepsy

Purple Day is the international day for epilepsy and falls on 26th March each year. Purple Day was created in 2008 by Cassidy Megan, a young girl from Canada, who has epilepsy and wanted to get people talking about the condition.

Find out more here

SUDEP

SUDEP

sudep

Sometimes a person with epilepsy dies during or following a seizure for no obvious reason. This Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon and in some cases may be preventable.

About SUDEP

For many people, epilepsy is a condition which can be well-managed and has little or no impact on their life. For others, ongoing seizures mean that epilepsy has a long-term impact on them and their ability to have a ‘normal life’. Like some other medical conditions, epilepsy can be a cause of death in some individuals, although this is not common.

There are more than half a million people with epilepsy in the UK. Around 600 people die each year due to Sudden unexpected death in epilepsy (or SUDEP). Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable.

SUDEP is a research priority for Epilepsy Society, and researchers have made an important breakthrough in discovering that an individual’s genetic makeup may contribute to the risk of SUDEP.

SUDEP can be a difficult subject to talk about. It can be upsetting or worrying to think about. Knowing a little about SUDEP and the risks around having seizures might help you to work out what risks apply to you and how to reduce them so you can feel more in control.

Definition of SUDEP

The textbook definition of SUDEP is

“the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death in patients with epilepsy with or without evidence for a seizure, and excluding documented status epilepticus, in which postmortem examination does not reveal a structural or toxicological cause for death”

This means that SUDEP is when someone is believed to have died during or after a seizure where no other cause of death can be found.

Why does SUDEP happen?

The reasons for SUDEP are not clearly understood. As SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person’s heart or breathing during or following the seizure.

The risk factors around SUDEP

Although we don’t know for certain why it happens, there are some situations that are thought to make SUDEP more likely in certain people.

  • As SUDEP is thought to happen during or following a seizure, uncontrolled or poorly controlled seizures are a risk.
  • SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures.

It is worth remembering that the risk of SUDEP varies from one person to another but some of the risks around SUDEP can be reduced.

Reducing risk

As SUDEP is thought to be linked to seizures happening, getting the best seizure control possible is a positive way to reduce risks, including the risk of accident, injury and SUDEP.

Getting the best seizure control possible might include:

  • Take anti-epileptic drugs (AEDs) consistently (every day) and around the same time or times each day. This is sometimes referred to as ‘being adherent’ to medication. If you have difficulties taking your medication (for example, if you find it difficult to remember to take your medication), aids such as pill boxes (drug wallets) might be helpful.
  • Keep a diary of when your seizures happen. This will help to show if there is a pattern to your seizures and whether any situations trigger your seizures (like being tired or stressed). It might also be useful to see how well medication is working to control your seizures. Download ‘Epilepsy Society’ free paper or electronic seizure diaries.
  • If you are still having seizures, having a review of your epilepsy and treatment with a neurologist or epilepsy nurse might be helpful. There may be changes to your treatment that would help to reduce the number of seizures you have.

SUDEP and sleep

SUDEP often happens when the person is asleep. If you have seizures during sleep, having a seizure alarm that alerts someone if you have a seizure, might be helpful. This means that help can be called to check on you at night.

Using safety or ‘anti-suffocation’ pillows, which have holes in them for ventilation means that if you are face down on the pillow during a seizure, you may be able to breathe more easily.

Find out more about alarms and safety aids.

Autism

Autism

Autism (NHS Choices)

Autism spectrum disorder (ASD) is a condition that affects social interaction, communication, interests and behaviour. It includes Asperger syndrome and childhood autism.

The signs of ASD typically start to develop in childhood.

It’s estimated about 1 in every 100 people in the UK has ASD. More boys are diagnosed with it than girls.

There’s no “cure” for ASD, but a range of educational and behavioural support programmes can help people with the condition.

Read about help and support available for people with ASD.

Signs and symptoms

People with ASD tend to have problems with social interaction and communication.

They can find it hard to understand other people’s emotions and feelings, and have difficulty starting conversations or taking part in them properly. Language development may be delayed.

People with ASD are often only interested in certain things, have repetitive behaviours, and like to stick to a set routine. They tend to get upset if these routines are disrupted.

Children and young people with ASD frequently experience a range of cognitive (thinking), learning, emotional and behavioural problems. For example, they may also have attention deficit hyperactivity disorder (ADHD), anxiety, or depression.

About half of those with ASD have some degree of learning difficulty. However, many people are able to be independent with appropriate support.

Read more about the symptoms of ASD.

Epilepsy

Epilepsy

About epilepsy

In the UK, there are over 600,000 people with epilepsy.

Any one of us can have a one-off epileptic seizure. But if you have epilepsy, it means you have had more than one epileptic seizure. And you could have some more in the future.

Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy

There are many types of epilepsy. Some types of epilepsy start when you are very young, and some in later life. Some types last for a short time and other types can last for the whole of your life.

The causes of epilepsy

In around six out of 10 people, doctors don’t know the cause of their epilepsy. For many of these people, it is just part of how they are made that makes them more likely to have a seizure.

Some people do have a cause for their epilepsy. One cause can be brain damage. There are a number of things that can cause brain damage. These include:

  • a difficult birth
  • a brain infection, such as meningitis
  • a stroke
  • a serious brain injury.

There doesn’t have to be damage to your brain for you to have epilepsy. You could have a medical condition in which it is quite common to also have epilepsy. Some of these conditions are tuberous sclerosis and cerebral palsy. In some people with a learning disability, the cause of their learning disability can also cause their epilepsy.

When epilepsy begins in later life, it’s more usual for doctors to find a cause. For example, you may be recovering from a stroke . Or, you may have had an accident or illness at some time in your life that left some scarring on your brain.

About epileptic seizures

Electrical activity is happening in our brain all the time. A seizure happens when there is a sudden burst of intense electrical activity in the brain. In this information this intense electrical activity is called ‘epileptic activity’.

Seizure types

There are many different types of seizure. They can be classed by where in the brain the epileptic activity starts.

Focal (partial) seizures

In these seizures, the epileptic activity starts in just a part of your brain. You may stay alert in this type of seizure. Or you may not know what is going on around you. Parts of your body may move and you can’t stop it. Or you may have unusual sensations or feelings. Sometimes, other people may not be aware that you are having a seizure.

Focal seizures can be very brief or last for minutes. Sometimes, epileptic activity starts as a focal seizure, spreads to the rest of your brain and becomes a generalised seizure.

Generalised seizures

These seizures involve epileptic activity in both halves of your brain. You lose consciousness during this type of seizure, although sometimes it can be so brief that no one notices. Sometimes it can last for many minutes. The muscles in your body may stiffen and/or jerk. You may fall down.

Things that trigger seizures

Some things make seizures more likely for some people with epilepsy. These are often referred to as ‘triggers’. Triggers are things like stress, not sleeping well and drinking too much alcohol. Some people say they have more seizures if they miss meals. Not taking your epilepsy medicine is another common trigger. A very small number of people with epilepsy have seizures triggered by lights that flash or flicker.

Avoiding triggers lowers the risk of having a seizure.

Hydrocephalus

Hydrocephalus

Hydrocephalus (NHS UK)
Symptoms of hydrocephalus
Hydrocephalus (fluid on the brain) causes slightly different symptoms depending on the type of hydrocephalus and the age of the person affected.
Congenital hydrocephalus
Babies born with hydrocephalus (congenital) often have distinctive physical characteristics. Physical signs in a baby include:

• an unusually large head
• their scalp may be thin and shiny with easily visible veins
• a bulging or tense fontanelle (the soft spot on the top of their head)
• their eyes may appear to be looking down; this is known as the ‘setting-sun sign’ because the eyes resemble the sun setting below the horizon
• the muscles in your baby’s lower limbs may appear stiff and be prone to muscle spasms

As well as these physical signs, congenital hydrocephalus can also cause symptoms such as:

• poor feeding
• irritability
• being sick
• drowsiness

Acquired hydrocephalus
Hydrocephalus that develops in adults or children (acquired) can cause headaches. The headache may be worse in the morning after waking up because the fluid in your brain doesn’t drain so well while you’re lying down and may have built up overnight. Sitting up for a while may improve your headache. However, as the condition progresses, the headaches may become continuous.

Other symptoms of acquired hydrocephalus include:

• neck pain
• feeling sick
• being sick (which may be worse in the morning)
• drowsiness, which can progress to a coma
• changes in your mental state, such as confusion
• blurred vision or double vision
• difficulty walking
• not being able to control your bladder (urinary incontinence) and, in some cases, your bowel (bowel incontinence)

Normal pressure hydrocephalus
Unlike the other two types of hydrocephalus, the symptoms of hydrocephalus that develop in older people (normal pressure hydrocephalus or NPH) usually develop slowly, over the course of many months or years.

NPH has three sets of distinctive symptoms. It affects your:

• mobility (how you walk)
• urinary system
• mental abilities
These are discussed below.

How you walk
The first noticeable symptom of NPH is a change in how you walk (your gait). You may find it increasingly difficult to take the first step when you want to start walking. Some people have described it as feeling as though they’re frozen to the spot. You may also shuffle rather than take proper steps.
As the condition progresses, you may become increasingly unsteady on your feet and be more likely to fall, particularly when turning.

Urinary symptoms
The change in the way that you walk is often followed by bouts of urinary incontinence, which may include symptoms such as:

• a frequent need to urinate
• an urgent need to urinate
• loss of bladder control

Mental abilities
The normal thinking process also starts to slow down. This can take the form of:

• being slow to respond to questions
• reacting slowly to situations
• being slow to process information

These symptoms may indicate that you have mild dementia. They should start to improve when NPH is treated.