On 1 June 2017 an article was published on the TechSpark news site all about Tap2Tag. It followed an initial conversation with Sam Downie, an epilepsy advocate based in Bristol, UK.

You can read the full article here.

We shared a video from someone called Matthew who describes how to deal with an epileptic seizure. It's a personal story and aims to educate everyone about what to do and, more importantly, what NOT to do when treating someone is having a seizure.

Matthew kindly gave his permission to share this video to raise awareness and hopefully save a life.

We are pleased to announce the launch of a new collaborative product called Tap2Tag+ (Pebbell+ in the UK and Europe). The Tap2Tag+ is an amazing little device that is compact GPS tracking and SOS device that now incorporates Tap2Tag Medical Alert.

For those who have elderly mum or dad living an independent life in their own home you may have come across the pendant and alarm system. This is where someone wears a pendant around their neck and, if they need help, they press the pendant. This is connected to a box in the home that in turn is connected to their telephone line. When the button is pressed the "box" calls a care line facility and the operator can talk via the "box" in the room. However this is only effective if the person is actually in the room where the box is situated. If they have a fall in the kitchen and are conscious enough to press the button, there is little chance of the operator or patient being able to hear each other.

One question has always been asked "What happens when mum goes shopping and needs help?"

The Tap2Tag+ solves this problem and many more besides. Think of the Tap2Tag+ as a mini mobile phone that has a range of very interesting features that provides added protection for your loved one. Here are just some of the key features

1. Fall detection

2. GPS tracking and location

3. Text alerts to next of kin including links to their location

4. Geo-fencing (this means that if a person goes outside of a specified area and alert is triggered (available at a small monthly cost)

5. Completely waterproof (can be worn in the shower)

6. You can make calls to it as it has its own telephone number

Fall detection

We know from personal experience the devastation that can be caused when an elderly member of the family has a fall in the home. Without immediate care their condition can deteriorate very quickly. The Tap2Tag+ has a fall detection gizmo built into it that detects when the device has experienced a rapid movement. If someone has a fall the Tap2Tag+ knows what has happened. After 10 seconds it will automatically contact the emergency contacts programmed into the device and tell them that the person has had a fall. It also sends the GPS co-ordinates of the wearer with a link to a map to show exactly where your loved one is located. Even if mum has a fall and is unconscious, her loved ones will know and be able to act accordingly.

The fall alert is an ideal safeguard for elderly people but will be of particular interest to those suffering from epilepsy or those with a physical handicap.

There are 10 levels of sensitivity built into the Tap2Tag+ fall detection that you can set yourself.

What happens if the device is dropped by accident? No problem. The device starts beeping for its 10 second countdown before sending out the alerts. Just pick the device up and press the central button to cancel the alert.

GPS tracking and location

One question we have been asked about our wristbands is "Does it have a GPS locator?" Our existing devices do not have any power so a GPS location system has been out of the question. But the Tap2Tag+ now has the ability.

If your loved one has a Tap2Tag+ you can locate the device at any time simply by sending a SMS text message to the device. You then receive a message back automatically with a link to a map showing exactly where the device is located. You can also sign up for the real time tracking service that shows where the device has been.

The Tap2Tag+ comes with a roaming SIM built into the device. This means that it works virtually anywhere in the world allowing you to locate your loved one by using a simple text message.

Text alerts and links to location

As a simple alert device it works extremely well. If your loved one is in trouble and needs help they simply press the central button. This immediately sends a text message to the next of kin telephone numbers that you have programmed into the device including a link to their location. It then automatically calls the first person on the emergency list to start a telephone call. If that person does not answer it can move on to the next number on the list.

For those who have a home care line already in place you can programme the emergency contact to be that of your care provider giving you 24/7 emergency care from a human operator. If this is of interest to you then please email us at support@tap2tag.me where we can give you some recommendations for tele-health providers.

Geo-fencing

Alzheimer's disease and dementia are both becoming a part of our lives with an ageing population. Allowing people to continue to live at home with dignity also needs to be provided with certain safeguards. With the Tap2Tag+ you can also sign up for a full tracking system that also includes geo-fencing. Geo-fencing allows you to "draw" a virtual barrier around a location such a person's home. If the Tap2Tag+ ventures outside of that area it immediately sends an alert to the emergency contacts. It is ideal for those loved ones with Alzheimer's and dementia.

Tap2Tag Medical Alert

And now this amazing device has Tap2Tag Medical Alert built in too! In the back of the device is a tiny chip, similar to those used in our medical alert wristbands, fobs and cards. In an emergency the paramedics can simply scan the back of the Tap2Tag+ to gain access to the emergency medical information. It also has the backup instructions to access the information through any other internet enabled device.

HoIP Telecom

HoIP Telecom are the primary developers of this clever piece of technology. We have teamed up with HoIP to develop the only mobile alert device that also includes medical information of the wearer. The company have already been selling their Pebbell in the UK and Europe and the device is well known throughout the NHS. Around 20,000 products have already been sold. The introduction of Tap2Tag into their devices is a major step forward in healthcare. In the UK and Europe the device will be sold as the Pebbell+. In North America, Australia, the Middle East and South Africa it will be known as the Tap2Tag+.

Prices for the Pebbell+/Tap2Tag+ will be around £168.00 (inc VAT). As this is effectively a mobile phone there is a small monthly cost of £3 per month plus call and SMS charges. On average these call charges are less than £2 per month.

We expect the Tap2Tag+/Pebbell+ to be launched at the end of August 2016 but you can pre-order one of these devices now by visiting our shop. Choose between blue, pink, green or black.

We love talking to our customers...It's what makes any good business tick. But if you know anything about Tap2Tag then you will know that it can have a dramatic effect on their lives too. We didn't aim to change the world but our little wristbands are changing the lives of people, one world at a time.

I received an email today from a lovely lady. She gave us permission to reproduce it here so that she could convey exactly what Tap2Tag has done for her.

"Hi Chris

I hope you don't mind me emailing you , but I just wanted to thank Tap2Tag for the impact that this small bracelet has had on me and my life!....

I was recently diagnosed with epilepsy following two big/ dangerous seizures. This not only knocked my confidence, but made me scared to go anywhere on my own leaving me dependent, isolated and very upset.

Since I have had my bracket I have not thought twice about going out on my own, I do everything that I used to do and my life is starting to go back to normal- and this is all thanks to Tap2Tag. Just knowing that people would be able to get information about my condition and the best way to help me if anything happens has really put my mind at ease! It has also had a big positive impact on my parents and family who were constantly worried that something would happen to me, and no one would be able to help! Now they worry less, as they know that they would be informed if anything were to happen and they can still help.

I am currently on a train on the way to see a friend for the day in Wales- something a few months ago I would have been too scared to do alone !

Just wanted tap2tag to be aware of the difference that they have made for me and my family!"

It left me with a lump in my throat when I read this email. Perhaps you can understand those feelings in your own life. Many people have told us that Tap2Tag is bringing peace of mind to them and their family and, until you read something like this, only then can you  see the impact it can have.

We take so many things for granted in our lives. But when a major, life-changing event occurs we just do not know how we would cope. Becoming epileptic and having to deal with the consequences of such a condition is just one of those events. Being able to feel "normal" again and do normal things seems such a small desire but for many this just is not possible. But as this lady has shown, it is often the small things that can have a dramatic impact.

Epilepsy is a problem with the brain’s electrical system. Electrical impulses cause brief changes in movement, behaviour, feeling, or awareness. These events, known as seizures, may last from a few seconds to a few minutes. Epilepsy is widely known for causing convulsions: sudden, uncontrolled movements. But seizures can trigger a wide range of other symptoms, from staring to falling to fumbling with clothes. Doctors divide seizures into different types depending on how the brain is affected. Each has its own set of symptoms.

Absence seizures are often described as staring spells. The person stops what he is doing and stares vacantly for a few seconds, then continues as if nothing happened. This type of seizure is more common in children and usually starts between the ages of 4 and 12. Some children have as many as 100 absence seizures in one day. 

Generalised tonic clonic seizures are the most easily recognised. They usually begin with a stiffening of the arms and legs, and are followed by jerking motions. These convulsions can last up to 3 minutes. After having one, a person may be tired and confused. This type of seizure involves both sides of the brain.

In partial seizures, just one side of the brain is affected. A person having a simple partial seizure may have jerking motions or hallucinations, and still be aware of what is happening. When having a complex partial seizure, a person may wander, mumble, smack their lips, or fumble with their clothes. He or she may appear to be conscious to those around them, but is actually unaware of what they are doing.

Anything that disrupts the brain’s natural circuitry can cause epilepsy, such as:

• Severe head injury
• Brain infection or disease
• Stroke
• Oxygen deprivation

A specific cause is never found for nearly two-thirds of people with epilepsy.

Most people with epilepsy live long lives and rarely are injured during their seizures. A person who tends to fall during seizures may need a special helmet to protect his head. Some types of seizures may increase the risk of death, but this is rare. Seizures often strike without warning, so certain activities can be dangerous. Losing consciousness while swimming or even taking a bath could be life-threatening. The same goes for many extreme sports, such as mountain climbing. 

If medications fail or cause side effects, a doctor may recommend the ketogenic diet. The diet is high in fat and low in carbs, a combination that makes the body burn fat instead of sugar. This creates changes in the brain that help reduce seizures. More than half of children who follow this diet have at least 50% less seizures. Some even stop having seizures. 

VNS stands for vagus nerve stimulation, a treatment that is sometimes called a “pacemaker for the brain.” A small device is placed under the skin of the chest. It sends electrical pulses to the brain, through a large nerve in the neck called the vagus nerve. VNS may be an option for people who don't do well with medication.

If you see someone having a seizure, take the following steps:

• Time how long it lasts.
• Clear the area of anything hard or sharp.
• Loosen anything at the neck that may affect breathing.
• Turn the person onto his or her side.
• Put something soft beneath the head.
• Don't place anything inside the mouth.
• Tap their Tap2Tag medical wristband.

Call the emergency services if a seizure lasts more than 5 minutes, happens again, or the person is pregnant, injured, or diabetic.

We want to tell you about Tanya.  This lady lives in the north of England and has, in the last year, been diagnosed with epilepsy.  Tanya has three great children.  One of the children has a disability and regularly has visits from carers to take care of her needs.

On a Saturday in early February Tanya was in the bathroom when she suffered a seizure and collapsed on the bathroom floor.  Fortunately the carers were visiting their daughter and heard the thump upstairs.  They were able to break down the bathroom door to find Tanya.  Tanya's 8 year old daughter then tapped mum's wristband with a mobile phone.

Upon accessing the information a text message was sent to Tanya's husband.  He immediately called home to find out that his wife had had a seizure.  By the time he had returned home the paramedics had arrived and their daughter was showing the first responders her mobile phone with all of mum's medical information.  The paramedics were amazed at the information available to them and they had even heard of Tap2Tag.

Tanya's husband said that he was "Amazed at how much information cannot be recalled when under extreme stress.  I couldn't even remember our postcode".

This is exactly how Tap2Tag was designed to work.  Important family members were notified immediately and the information was available for the paramedics in double quick time.

Tanya was OK after a visit from the paramedics and all is well at home.

Tap2Tag’s innovative medical alert wristbands, which are designed to provide potentially lifesaving information during an emergency, are now available through Epilepsy Ireland’s website, www.epilepsy.ie.

Epilepsy Ireland campaigns to raise awareness about the condition and improve the lives of the estimated 40,000 people living with epilepsy.

In 2014, UK-based Tap2Tag launched its range of medical devices – including wristbands, small

Chris showing us the range of Tap2Tag devices

cards and key fobs – which are enabled with NFC (near field communication) technology.

When activated, usually with an internet-enabled smart phone, the devices provide near instant access to information about the wearer’s medical conditions, for instance epilepsy, as well as their identity.

What’s more, once a device has been activated, the Tap2Tag system can also be used to send a message, either as a text or email, to designated family members or carers to alert them to the emergency.

Peter Murphy, Deputy CEO for Epilepsy Ireland

Peter Murphy, deputy chief executive at Epilepsy Ireland, said: “Many people with epilepsy are worried about having a seizure in public and in particular about the inappropriate actions that can be taken when a seizure occurs. Devices which give information about a person’s epilepsy and seizure type can be very useful in helping passers-by know what to do if they see someone having a seizure. We trialled the Tap2Tag wristbands for 2 months at the end of 2014 with a group of 20 volunteers and the feedback was extremely positive.  We are very pleased to be able to offer these devices free of charge to people who become a member of our organisation and for sale through our online shop.”

Because of Epilepsy Ireland's charitable status, Tap2Tag is providing its devices at cost price so that any money that is generated in on-line sales can go towards the charity’s activities all over Ireland.

Tap2Tag’s managing director, Chris Ford, said: “Ever since we first launched the devices we have worked closely with epilepsy charities in the UK and Ireland.  It is a condition that is close to our hearts as we have seen the direct impact and reassurance that customers receive from wearing one of our devices.  We believe that Tap2Tag medical alert wristbands have the potential to help many thousands of people who live with the condition.

“The fact that Ireland's national epilepsy charity, which does so much good work supporting and improving the lives of thousands, believes in our products enough to sell them in its own shop is a source of enormous pride for all associated with Tap2Tag.”

About Epilepsy & Epilepsy Ireland

Epilepsy is a very common neurological condition, characterised by a tendency to have recurring seizures. There are 37,000 people with epilepsy in Ireland, including about 15,000 people whose seizures are uncontrolled.

Epilepsy Ireland is the national organisation working with and for people affected by epilepsy and their families and carers. Established in 1966, the charity has strived to achieve a society where no person's life is limited by epilepsy.  In addition to providing a range of services and supports, Epilepsy Ireland also works to support and train healthcare professionals; runs a training programme for young adults with epilepsy; raises public epilepsy awareness; advocates on behalf of all those with the condition and supports Irish epilepsy research.

For more information, visit epilepsy.ie or follow Epilepsy Ireland on Twitter (@epilepsyireland) and Facebook (facebook.com/epilepsy.ie).

Notes on Tap2Tag

Anyone can benefit from Tap2Tag Medical. However, for those with known medical conditions, the elderly or anyone taking prescribed drugs, it will be particularly useful and, potentially, life-saving.

Here’s a link to a YouTube video which explains how the system works, with a more detailed description below:

https://www.youtube.com/watch?v=KQ7pNugPJqE

Each device is embedded with technology known as NFC (near-field communication) designed for use with mobile phones (most, but not all, smart phones already have this technology and it’s anticipated that, by the end of 2015, virtually all new smart phones will have it).

In an emergency, for example when someone collapses, after calling the emergency services any passer-by or neighbour with an NFC-enabled mobile phone can just tap the patient’s device and, within a couple of clicks, gain instant access to medical information the wearer has chosen to disclose, such as:

• Name
• Allergies
• Known medical conditions
• Medications they need
• Any message, for example: “I have a heart condition. Spray is in my bag. Spray once in my mouth then wait for paramedics.”
• Organ donation status
• Date of birth
• Blood group
• Photograph (to confirm identity).

Even if the first-responder hasn’t activated the Tap2Tag Medical, the paramedics can do so on arrival, gaining potentially life-saving information about the patient.

No data is stored on the device itself. Instead each tag has a unique code, against which information is stored on a secure website. The user controls (and updates as necessary) all data and chooses what, and what not, to include.

Useful links:

www.tap2tag.me

https://twitter.com/Tap2Tag

https://www.facebook.com/Tap2Tag

http://www.epilepsy.ie/index.cfm/spKey/brainwave_store.tap2tag.html

http://www.epilepsy.ie/index.cfm/spKey/news.brainwave/spId/76FC208C-71D3-4633-8D622121C6636D6D.html

On 2 December 2014 we accepted an invitation from Helen Hodgson to attend the Bristol Epilepsy Support Group.  Helen is an Epilepsy Specialist/Sapphire Nurse at Southmead Hospital, Bristol and had been introduced to Tap2Tag by one of her patients.

This Christmas meeting was attended by around 20 people who were interested to hear about our products and we were given an extremely warm welcome...we even brought food!

These local support groups are an essential way in which people with epilepsy and their family can get together, socialise and discuss how living with epilepsy affects their lives.  In addition they have a great website at www.bristolepilepsy.org.uk, which has some great articles and, rather unusually, podcasts that can be downloaded.

As far as the meeting went, well, no-one fell asleep.  We learned a lot and we think that those attending were impressed with our wristbands.

The Specialist

As a director of the Mount Sinai Epilepsy Center, Dr. Lara Marcuse oversees the care of thousands of patients with epilepsy. November is Epilepsy Awareness Month.

WHO’S AT RISK

Over two million Americans are currently living with epilepsy — including celebrity musicians Lil Wayne, Neil Young, and Prince. “There are many causes of epilepsy, which is an enduring predisposition to having a seizure,” says Marcuse. “Seizures are caused by abnormal electrical activity of the brain, which can cause the typical seizure with falling down, shaking and foaming at the mouth. Or a seizure can manifest as a feeling of fear, ringing in the ears, or even a sense of deja vu.” Doctors estimate that fully 1% of the general public has epilepsy, and some people may not know it.

A small seizure with a feeling of fear can be misdiagnosed as a panic attack. “One way to tell the difference is that panic attacks last for over 15 minutes, whereas small seizures tend to be very brief, just a few seconds to a minute,” says Marcuse. “Sometimes, once patients have their first big seizure, they realize they’ve been having small seizures for years, they just didn’t recognize them as such.” The type of seizure you have depends on where in the brain it originates.

Some but not all cases of epilepsy are due to a genetic cause. “Rarely the genetics are straightforward, and the patient gets it from one of his parents,” says Marcuse. “Other times, the genetics are more complicated, so you might not see many cases in the immediate family.” Any type of brain lesion can also cause epilepsy, including traumatic brain injury, stroke, and brain tumors. And in most cases, doctors still don’t know what causes an individual patient’s epilepsy.

People from all walks of life are affected by epilepsy. “It’s a pretty egalitarian perpetrator — everyone can get epilepsy, and men and women are nearly equally affected,” says Marcuse. “It exists in every culture and has since ancient times.”

The onset of epilepsy can fall anywhere in the lifespan. “There are two peaks when most people begin to develop symptoms for the first time — either as newborns or children, or later in life, over age 60,” says Marcuse. “Most of the time, epilepsy is treatable and patients can have the same quality of life as anyone else; however, in some cases it can be fatal. A woman recently had an epileptic seizure in her jail cell in Brooklyn, and she died from it.”

SIGNS AND SYMPTOMS

Patients can experience a whole range of seizures, from mild to severe, depending on whether part of all of the brain is affected. “The biggest type of seizures, called generalized tonic-clonic seizures, start on both sides of the brain and are dramatic — individuals lose awareness, stiffen, fall down, shake all over, might bite their tongue, or urinate on themselves,” says Marcuse. “Afterwards, people report that their muscles are sore and that they feel confused.” Sometimes these seizures happen at night, and the individual might not realize that it has happened.

Partial seizures — which affect only part of the brain — can cause of a number of symptoms depending on which part of the brain is affected.

“A partial seizure can take the form of a feeling, like deja vu, or a movement, like the jerking of the hand or jaw,” says Marcuse. “If a partial seizure spreads, the individual will lose awareness but the eyes usually remain open and the individual may engage in bizarre behavior, likely picking movements and strange chewing motions. Finally if the partial seizure spreads further, it can lead to a generalized tonic clonic seizure.” If you’re having some type of experience that you’re not sure what to make of, it’s reasonable to consult a neurologist.

TRADITIONAL TREATMENT

The first step toward getting the right treatment entails a comprehensive gathering of information. “One of the most important elements of making the diagnosis of epilepsy is for the doctor to talk to the patient, take a history, and also to talk to other people who have witnessed the events,” says Marcuse. “The next step is to get an image of the brain, usually an MRI, and to record the brain waves using a painless technique called EEG.”

Most patients will opt for treatment once they have had two seizures, at which point the chance of having a third is very high. “Generally we start with medication, and we have over 20 FDA approved drugs,” says Marcuse. “Not every medication works for every person, and some people have side effects — these medicines work on the brain so they can have strong side effects. We need to be very active in responding to what a given individual is feeling.”

The goal of epilepsy treatment is not just to control the seizures. “If the patient isn’t feeling well on a medication, even if she isn’t getting seizures, that’s not successful,” says Marcuse. “The goal is to stop seizures and promote a high quality of life.”

About 30% of patients are not fully controlled with medications. “These patients require a lot of attention and should considered for other treatment options, including epilepsy surgery, which entails removing the part of the brain that causes the seizures,” says Marcuse. “This can be incredibly effective, but not available to some patients, because some parts of the brain can’t be removed.”

Another option is a newly approved device called responsive neuro-stimulation. “This device can actually sense the seizure beginning and stimulate the affected area of the brain to stop the seizure from happening,” says Marcuse. “The ketogenic diet, a high-fat, low-carbohydrate diet, can be very effective. Some people add complimentary techniques to their treatment like yoga, meditation or biofeedback.”

RESEARCH BREAKTHROUGHS

Epilepsy research is booming. “There are many new ideas on the horizon,” says Marcuse. “including the possibility of implanting neurons (brain cells) that can be used to calm the brain and inhibit seizure activity.”

Questions for your doctor

Because there are so many different treatment options, it’s all the more important to be a proactive patient. Every patient should ask the doctor, “Why are you advising this medication for me?” and “What are your goals of care?” If you are a woman in your childbearing years, ask, “How is epilepsy and the medication affecting my hormones and the possibility of becoming pregnant? If I become pregnant, what are the possible effects of the medication?” “If you have epilepsy, and you’re not satisfied either with the level of control you have or how you feel on the meds, seek out a fresh approach,” says Marcuse. "It's important to be hopeful, because there are so many new options, and your doctor should work with you to have a good life by any means possible — medications, surgery, lifestyle, and complementary techniques should all be discussed.”

WHAT YOU CAN DO

Get informed.

Two digital sources you can trust are the Epilepsy Foundation (epilepsy.com/) and Mount Sinai (mountsinai.org/patient-care/service-areas/neurology/areas-of-care/epilepsy-center).

Know what to do — and not to do — as a bystander.

If you see someone having a seizure on the subway, don’t put something in their mouth. “They can choke on it, and it doesn’t help with the tongue biting,” says Marcuse. “Instead, look for a medic alert bracelet, try to get sharp objects out of the environment, and once their body is loose, roll them on their side. And call 999.”

Educate yourself.

“This is a really common disorder, and unfortunately, it still carries significant stigma,” says Marcuse. “It’s frightening to watch someone have a seizure, and in the past it was often thought of as being possessed by the devil. But it's just a chronic medical condition like any other.”

Don’t avoid the topic.

If you know someone with epilepsy, ask if there is anything they might need from you.

This post has been reproduced from http://www.nydailynews.com/life-style/health/daily-checkup-coping-epilepsy-article-1.2022202 by Katie Charles

We have worked very closely with Epilepsy charities in the UK since we launched Tap2Tag back in May 2014.  Interest has spread across the Irish Sea and we having been discussing Tap2Tag with Epilepsy Ireland for a few months.  As a result the Irish charity has now launched a trial of Tap2Tag within the Republic of Ireland and are seeking volunteers.

Tap2Tag donated around 20 wristbands to the charity and these are being used in the trial.

Epilepsy Ireland said "We think the device could be a very useful alternative to the Epi-alert bracelet and other similar devices that have been on the market for some time. We're considering offering Tap2Tag as a membership benefit to all new members from 2015 (as an alternative to the free Epi-Alert or Safety pillow). But first we'd like to hear YOUR thoughts on the device."

If you are following us in Ireland and want to take part in the trial please check out the full article here.