Living with hidden disabilities

In the UK alone, 1 in 5 people has a disability, with 80% of those having an invisible disability.

What is an invisible disability?

A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).

Invisible disabilities, also known as Hidden Disabilities or Non-visible Disabilities, are disabilities that are not immediately apparent. Typically, they are chronic illnesses and conditions that significantly impair normal activities of daily living.

Living with these conditions can make daily life more demanding for many people. They affect each person in different ways and can be painful, exhausting, and isolating. Without visible evidence of the hidden disability, it is frequently difficult for others to acknowledge the challenges faced and as a consequence, sympathy and understanding can often be in short supply.

Examples of Hidden Disabilities
While this list is by no means exhaustive, some examples of hidden disabilities include:

  • Autism
  • Brain injuries
  • Crohn’s Disease
  • Chronic pain
  • Cystic Fibrosis
  • Depression, ADHD, Bipolar Disorder, Schizophrenia, and other mental health conditions
  • Diabetes
  • Epilepsy
  • Learning difficulties, including dyslexia, dyspraxia, dysgraphia, and language processing disorder
  • Lupus
  • Rheumatoid Arthritis
  • Visual and auditory disabilities. These could be considered visible if the person with the disability didn’t wear support aids such as glasses or hearing aids

During the COVID-19 pandemic, invisible disabilities have become a talking point, which is why it is important to raise awareness of them.

Epilepsy

Epilepsy is a common condition where sudden bursts of electrical activity in the brain cause seizures or fits. There are lots of possible symptoms of epileptic seizures, including uncontrollable shaking or losing awareness of things around you. The main treatment for epilepsy is medicine to help prevent seizures. It’s often not clear what causes epilepsy. Sometimes it runs in families or is caused by damage to the brain from trauma such as a severe head injury.

Useful Resources

Epilepsy bed sensor

Footprint GPS Alarm

Seizures and me: Charlotte’s story

Epilepsy Action – Free online course What to do when someone has a seizure

Epilepsy first aid poster

How we can help

Assistive technology can promote a sense of independence for those living with epilepsy, whilst providing peace of mind and reassurance for loved ones and carers.

Epilepsy sensors are used to monitor people with epilepsy while they are asleep in bed. Patented sensor technology detects a person’s movement in bed and is able to differentiate normal movements from epileptic seizures enabling tonic clonic seizures to be detected the moment they occur. They help carers respond quickly when needed, and avoid disturbing a person’s sleep when they are not. The sensitivity of the sensor can be adjusted to best suit the person’s requirements.

This sensor is suitable for use with children as well as adults.

Outside the home                                   

Our GPS falls detector recognises when a person falls and connects straight through to our alarm response centre – ensuring help is on its way when you need it most. The alarm can be set up to alert an emergency contact or we can request an ambulance right away – the plan can be tailored to your individual needs.

This is a great solution for teenagers or adults with epilepsy. In many cases a parent or carer for someone with epilepsy will undertake regular checks or need to be on hand 24/7. This means constant worry for the care giver and a loss of independence for the individual. Our Footprint device will automatically raise an alert if it detects a fall, (no need to press a button) as well as being able to locate where you are. This enables appropriate care to be provided quickly, without the need for manual checks. 

A Helping Hand

Our products and plans are tailor made to help you or your loved ones stay safe. Explore the range below and see how Progress Lifeline can assist those with Epilepsy.

Epilepsy bed sensor

These are used to detect seizures whilst in bed. They are able to detect movements that are associated with a tonic clonic type seizure.

Footprint GPS Alarm & Falls Detector

The Footprint is a GPS location device, pendant alarm & falls detector all-in-one.

Falls Detector

The Falls Detector can be worn as a pendant or as a watch. When a fall is detected, the device automatically connects the wearer to our alarm response centre – no need to even press the button.

Key Safe

A KeySafe can be installed externally to allow safe and secure emergency access to your home. (A code is used by contacts that you approve to help in an emergency).

Emergency Home Response

Add our Emergency Home Response service to any alarm package for just £11 per month. Our responders provide 24/7 assistance to you at home if your family and named contacts can’t get there.

  

Are Cerebral Palsy & Epilepsy connected

Around half of all children with cerebral palsy also have epilepsy. Both cerebral palsy and epilepsy are neurological disorders that often coexist with one another.

What is Epilepsy?

According to the National Institute of Neurological Disorders, epilepsy encompasses a “spectrum of brain disorders,” in which the pattern of normal neuronal activity is disrupted. [1] When the activity of brain cells, or neurons, is disturbed, convulsions (known as seizures) and muscle spasms result.

During these episodes, some children will experience loss of consciousness. As the fourth most common neurological disorder in the world, epilepsy can affect anyone at any age. Around 1 out of every 100,000 people develop epilepsy each year.

There are a number of different types of seizures, and people with epilepsy may experience one or several of the various types. It’s important to note that there is a difference between epilepsy and seizures. Someone who has only one seizure generally does not have epilepsy.

Epilepsy is marked by recurrent seizures. If someone has at least two but usually more seizures as an ongoing condition, they are more likely to be diagnosed with a seizure disorder, otherwise known as epilepsy.

What Causes Epilepsy?

For about half of epilepsy cases, there’s no known cause. Among the known causes of epilepsy, the most common include:

Prenatal Injuries

During intrauterine life, the developing brain of a fetus is highly susceptible to damage. This can occur from prenatal infections, maternal alcohol and drug use, when the oxygen or blood supply is low, and with poor nutrition or vitamin deficiencies.

Developmental and Genetic Disorders 

As mentioned earlier, cerebral palsy and epilepsy often coexist. Other neurodevelopmental and genetic disorders that can be associated with epilepsy include conditions like autism, neurofibromatosis, Angelman syndrome, and many others.

Sometimes a mutation in one or more genes can cause abnormalities in the brain that can be passed down and make a whole family more susceptible to epilepsy or other brain disorders.

Head Trauma

Head trauma, such as birth injuries, motor vehicle collisions, or any accident in which the head undergoes traumatic damage can lead to epilepsy. [2]

Diseases

A number of infectious diseases can cause direct damage to brain tissue, such as viral encephalitis and meningitis, which can result in epilepsy.

Oxygen Loss 

Any significant lack of oxygen to the brain before, during, or after birth, can cause seizures in babies. This can also occur with people of any age with a stroke, which is a bleed or obstruction to the blood flow in the brain. The brain damage that occurs is very often permanent and may leave the child with a seizure disorder.

What are the Symptoms of Epilepsy?

The main symptom of epilepsy is recurrent seizures, which are marked by any of the following:

  • Uncontrollable, jerking body movements, usually in the arms and legs
  • Repetitive movements of the face, including lip-smacking or chewing
  • Loss of awareness
  • Drooling
  • Difficulty talking
  • Rigid, tense muscles
  • The skin may look pale or flushed
  • Racing heart
  • Dilated pupils or staring
  • Sweating
  • Tongue biting
  • Tremors

Keep in mind that not every child will experience all of these symptoms.

Epilepsy Treatment

Physicians usually treat epilepsy with medication. [3] The type of medicine prescribed is based on the particular seizure type experienced by the child. However, since each child is different, finding the correct medication, along with the right dosage, can be an arduous process.

Doctors usually prescribe the first medication at a low dosage to see how effective it is, and how many side effects the child will experience. Most epilepsy medications have significant side effects, especially when they are first started, which can include dizziness, weight gain, fatigue, nausea, skin rashes, and more, depending on which medication is prescribed.

Over half of the people who begin medication find success with this method of treatment, and with continued use, may even eventually become seizure-free. There are some for whom the medication works well to control the seizures, but they will have to continue on medicine for life in order to remain seizure-free.

If medications fail to work, physicians may recommend a treatment called vagus nerve stimulation. This involves the placement of a small device into the patient’s chest. This device sends low levels of electrical energy to stimulate the vagus nerve, which may reduce seizure activity between 20% and 40%.

The ketogenic diet is another treatment option for epilepsy that fails to respond to medication. It’s a strict diet, however, that entails substantially lowering carbohydrates while increasing fats. The body will then use fat for energy, as opposed to carbohydrates.

It is a difficult diet for families to follow because of the severe limitations in what the child may eat, as well as the continuous need to monitor for ketones.

You’ll need to work closely with your physician, as well as a dietitian or nutritional counselor, if you decide to have your child try the ketogenic diet, as some children may experience adverse side effects, including dehydration and nutritional deficiencies.

However, with proper medical supervision, the side effects are not too common. Around 10% to 15% of children who go on the ketogenic diet are seizure-free within a year, although it is very rare for people to be able to stay on this diet successfully for long periods of time.

If all other treatments have been exhausted, surgery may be considered as the next option. Surgical procedures are generally only performed as a last resort, and when doctors determine that the seizures occur in a specific part of the brain that doesn’t hinder vision, speech, hearing, or motor function. During the operation, the part of the brain that’s causing seizures is removed.

Studies on Cerebral Palsy and Epilepsy

According to a scientific study published in the European Journal of Epilepsy, spastic quadriplegia and spastic diplegia are the most common types of cerebral palsy associated with epilepsy. [4] Symptoms of epilepsy generally start for children with cerebral palsy during the first year of life, some within the first month after birth.

Epilepsy Prognosis

If children respond well to medication, there’s a good chance that they’ll be seizure-free one day, and may even be able to discontinue epilepsy medication use. It is important to note, however, that many children with cerebral palsy will need to remain on medication to control their seizures for life.

The University of Maryland Medical Center (UMM) states that long-term survival rates are lowered when traditional treatment options, such as medications and surgery, fail to work. Accidents from uncontrollable seizures also play into the lower survival rate.

These are cases in which the severity of the seizure disorder is part of an overall more severe form of cerebral palsy, and many other organ systems are affected, leading to a shortened life span.

Down Syndrome and Epilepsy

ABOUT EPILEPSY

Epilepsy is a medical term to describe when the cells in a person’s brain have a tendency to give off abnormal electrical activity. As our brains control our bodies, this abnormal electrical activity may result in the person having unusual movements or sensations (sometimes called a “seizure”). There are lots of different types of epilepsy (so some people prefer the term “the Epilepsies”) because there are lots of different ways in which the brain cell electrical activity can impact on our bodies.

It is estimated that around 1 in every 10 people who have Down’s syndrome will develop epilepsy at some point in their lives, compared to around 1 in every 100 people who do not have Down’s syndrome. Just under half of the people with Down’s syndrome who have epilepsy develop it when they are less than a year old, mainly with Epileptic Spasms, but other types of seizure can occur, most often in teens or early adult years, though they can also occur in later life.

Epilepsy occurring at any age needs medical assessment, and medicines may be offered to try and control it. 

Brain Abscess

Photo by Anna Shvets on Pexels.com

What is a Brain Abscess?

A brain abscess is a collection of pus enclosed in the brain tissue, caused by a bacterial or fungal infection. A brain abscess can develop as a complication of an infection, trauma or surgery. They are rare, although people with weakened immune systems (such as people with HIV or those who have received an organ transplant) are more likely to get a brain abscess. 

This type of infection usually begins in one of these ways: 

  • It spreads from a nearby site, such as a middle ear infection, sinus infection or dental abscess.  
  • Blood carries the infection from further away in the body to the brain.  
  • Infectious organisms enter the brain through a penetrating injury, such as a gunshot wound, or from neurosurgical procedures or facial trauma. 

Symptoms

Symptoms vary depending on the size and location of the abscess. More than 75% of people with a brain abscess have a dull, achy headache. For many people this is the only symptom. The pain usually is limited to the side of the brain where the abscess is, and the pain usually becomes worse until the abscess is treated. Aspirin and other pain medication do not relieve the pain. 

About half of the people with a brain abscess have a low-grade fever. Other symptoms may include nausea and vomiting, neck stiffness, seizures, personality changes and muscular weakness on one side of the body.

Diagnosis

Diagnosing a brain abscess is not easy because the early symptoms are so general. For example, many things can cause headaches. For this reason, the diagnosis of brain abscess is usually delayed until about two weeks after symptoms first develop. In some cases, people with brain abscesses develop seizures or neurological changes, such as muscle weakness on one side of the body, before the diagnosis is made.  

If your doctor is concerned you have a brain abscess, he or she will ask about your medical and travel history to determine your risk of having certain infections. The doctor also will ask if you have any of the symptoms of brain abscess. If you do, he or she will ask when they started, how they’ve progressed, and whether you’ve had a recent infection or any trauma that could predispose you to a brain abscess. 

To diagnose a brain abscess, you will need diagnostic tests, such as computed tomography (CT) or magnetic resonance imaging (MRI) scans. These provide pictures of the inside of the brain. The abscess will appear as one or more spots. Blood and other body fluids may be studied to find the original source of the infection. If the diagnosis remains uncertain, a neurosurgeon can remove a piece of the brain abscess with a fine needle. 

Expected Duration

A brain abscess can grow very quickly, typically becoming fully formed within about two weeks. Your doctor will begin treatment immediately after you are diagnosed. Prompt medical attention is the key to relieving your symptoms more quickly and minimizing damage to your long-term health. Surgical drainage of the abscess is often necessary as well. 

Prevention

Some brain abscesses are related to poor dental hygiene or complex sinus infections.  You should floss daily, brush your teeth properly and visit your dentist regularly. Treat sinus infections with decongestants. If symptoms of a sinus or dental infection persist, you may need an antibiotic.  

People with untreated HIV infection are at increased risk of brain abscess. Prevent HIV by practicing safe sex. If you have HIV, you substantially reduce your chance of developing a brain abscess by taking anti-viral medications regularly.

Treatment

Treatment of a brain abscess typically requires a two-pronged approach:  

  • Treating the infection with antibiotics — If the specific type of bacterium is known, a targeted antibiotic is used; otherwise, broad-spectrum antibiotics are given to kill a large number of possible infectious agents. Antibiotics usually are continued for six weeks or more to make sure that the infection is eliminated. 
  • Draining or removing the abscess — If the abscess can be reached easily and there is little danger of damaging the brain, the abscess may be surgically removed. In other cases, the abscess is drained, either by cutting it or by inserting a needle.  

To confirm that the treatment was successful, you will be monitored by magnetic resonance imaging (MRI) or computed tomography (CT) scans to view the brain and abscess. If seizures are a problem you may need anticonvulsant medications, which may continue even after the abscess has been successfully treated.  

When To Call A Professional

See your doctor if you experience a nearly constant headache that gets worse over several days or weeks. If you also have nausea, vomiting, seizures, personality changes or muscle weakness, seek emergency care. 

Prognosis

Without treatment, a brain abscess can be fatal. Most people with a brain abscess are treated successfully. Unfortunately, long-term neurological problems are common even after the abscess is removed and the infection is treated. For example, there may be lingering problems with body function, personality changes or seizures due to scarring or other damage to the brain. 

Learn more about Brain Abscess

Associated drugs

Chiarimalformation Seizures

In patients with Chiari malformation type 1 (CMI), epileptic seizures are occasionally reported both in symptomatic patients candidate to surgery and in patients without symptoms of tonsillar displacement in whom CM1 is often an incidental finding in the diagnostic work up for idiopathic epilepsies. In both groups of patients, the course of epilepsy is almost invariably favorable, with a few seizures easily controlled by treatment. In a subset of CM1 patients, epilepsy occurs in the context of neurodevelopmental disorders that also include mental retardation, autism and somatic dysmorphisms. Epileptic seizures must be accurately differentiated by potentially harmful paroxysmal events due to compression of the medulla, particularly by the cerebellar fits characterized by drop attacks, abnormal extensor posturing and apnea.

Epilepsy Drugs#2 Clobazam

Generic name: Clobazam

Available as: Clobazam, Frisium, Perizam, Tapclob, Zacco.

Anti-epileptic drugs (AEDs) are the main form of treatment for people with epilepsy. And up to 70% (7 in 10) people with epilepsy could have their seizures completely controlled with AEDs. There are around 25 AEDs used to treat seizures, and different AEDs work for different seizures. 

Find out more about Clobazam

Please note:

  • This information is a guide only. For information on doses and side effects click on the generic name above and this will take you to the electronic Medicines Compendium (eMC) where you can view the patient information leaflet (PIL).
     
  • A first line AED is an AED that is tried first. Some AEDs added to a first line AED are called second line AEDs.
     
  • AEDs are not split into first and second line for treating children age 12 and under.
     
  • Treatment of neonatal seizures (from birth to 28 days of age) is not covered.
     
  • ‘Effective’ means the seizures it works for. ‘Monotherapy’ means the AED is taken on its own. ‘Add-on therapy’ means the AED is taken alongside other AEDs. ‘Tolerance’ means that a drug becomes less effective the longer you take it.