Who am I?
I am a 24 year old lass living in a small town near Brighton and after three years of testing I have the diagnosis of generalised epilepsy - something I have kept secret for far too long. It will probably be with me for life so now is the time to accept it and learn to manage seizures.
How does epilepsy affect me?
In the past I have had up to 12 tonic-clonic seizures (also known as grand mal - the most common type of seizure whereby the individual loses consciousness and experiences stiffening of muscles and jerking movements) within a 12 hour period - which is exhausting. But the thing epilepsy has had the most impact on is independence. I often can't be left alone for fear of having a seizure without anyone knowing - I've also been known to have nocturnal seizures meaning although people are home, no body is aware that I am having a seizure as everyone is asleep. As you may know, seizures which continue for too long can cause brain damage, nevermind the potential physical danger it can put you in. This is where you lovely lot come in...
Why am I crowdfunding?
I am currently in the process of setting up a business from home - due to recent seizure activity, maintaining a full time job is near impossible; part time a significant challenge. However, working from home still has its downfalls - I stay at home but the rest of the household go out to work, leaving me home alone. So, what's the plan from here?
I realised that there may be some kind of 'fitness tracker' or watch for people with epilepsy which can detect seizures...
There are a couple of options - The Empatica Embrace monitor allows for tracking of the central nervous system aswell as monitoring sleep and activity levels. It requires an additional annual subscription fee for a service which allows the device to detect seizure activity and send an alert to a carer/family member/friend etc. to let them know of a fall or seizure. Sounds great! Except for the rather large price tag - which is to be expected for such a specific piece of kit.
The alternative option comes from some very generous individuals with an exceptional knowledge of coding and programming who have designed an app which detects seizure activity based on physical movement. This uses the Pebble Smartwatch - the accelerometer detects continuing 'convulsive like' movements which are above a certain threshold. The device can then go on to automatically use the OpenSeizureDetector app (made by Graham Jones - who also credits other individuals for their input on the app website) and then alert designated contacts or can be cancelled in the case of a false alarm. As far as my research has found, this app is in the early stages of development, however at its current stage would be more than adequate for my needs and is due to continue to be updated as time and technology progress.
What will the money be used for?
1. Pebble 2 Smartwatch - approximately £100. I have chosen this make due to the compatibility with the app and the model is waterproof up to 30m - this means I can wear the watch in the shower and don't have to worry about things like rain! The built in heart rate monitor is also a useful feature for accurately recording changes in heart rate around the time of a seizure.
2. A budget android based mobile phone £50-£100- why? The app itself runs from a mobile phone (connected to the watch via bluetooth) which when given the signal sends out alert messages to designated contacts, letting people know of a possible fall or seizure. Although there are options to run similar apps through an Apple device, this method also requires use of a cloud based SMS/voice calling platform - Twilio. Although reasonably priced, this would be an extra ongoing cost aswell as a potential hindrance if for any reason the platform/server were to go down. Apple products must use a platform like Twilio as the device's programming prevents an app from being able to send an SMS message. This is not the case on android based devices - the app itself can be directed to use the SMS settings within the phone itself to alert desired contacts.
3. OpenSeizureDetector app - £0 - this is a free app which Graham Jones (and supporters) has kindly developed for public use
4. A silicone medical alert bracelet - approximately £12. To complete this set up, I'd like to get an engraved silicone medical alert bracelet. This way, in the event where the emergency services need to be involved, they also have access to my basic medical information, including any medication details and GP contact information.
Estimated total - £212
So, why is my target £300?
To date, I have made sure not to claim any benefits from the government - I worked hard before my seizures started to have such a significant impact and managed to build a small amount in savings. With setting up a business from home, my savings have quickly diminished leaving little money to get by let alone invest in medical related equipment. The money raised will be spent on purchasing the items above which I need to make my life easier from day to day and regain the independence I once had. The target amount has been increased from £212 to £300 to account for any costs I did not originally consider, however the remainder that I do not need will be donated to the creator of this life changing app to support the continuing development of the software as well as a donation to the Epilepsy Society. Any donations made in excess of £300 will be donated 50/50 to these causes without question.
A massive thank you
A huge Thank You to those of you who choose to donate your hard earned money to making my life a better one. And for those of you who have read my story but have chosen not to donate to this cause, thank you for taking the time to read about not only my story but the options available for seizure detection systems for those with epilepsy.