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Torie Robinson of Epilepsy Sparks on being an International Patient Advocate

Torie Robinson of Epilepsy Sparks on being an International Patient Advocate

International Epilepsy Day is a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE). It is a global event celebrated annually on the 2nd Monday of February, to promote awareness on epilepsy right around the world. Obviously, here at FutureNeuro, we are passionate about epilepsy and epilepsy research and we are privileged to work alongside many like minded people and organisations.

One such person is Torie Robinson, founder of UK-based Epilepsy Sparks, an educational blog about epilepsy, featuring people affected by epilepsy, neurological professionals, scientists, carers, and more. Torie has been in talks with our Epilepsy in English team over the last few months and very soon you will see their content featured on Epilepsy Sparks, as well as some other interesting blogs by our young researchers.

Torie has kindly agreed to talk about her experience of working as part of the EpiCARE Patient Advocate Group and how beneficial she found working with a wide range of people, uniting to achieve a common goal.

Intro

My name is Torie Robinson and I’ve always been very open about my epilepsy. But after I had a temporal lobectomy I was shocked at how surprised others were to learn about it! I didn’t ‘look’ like a person with epilepsy. I didn’t ‘look’ or ‘sound’ like I’d had part of my brain removed. They were confused to learn that I was still on medication. Becoming involved with others affected by epilepsy I was also taken aback at how uneducated so many were about their own condition.

So in 2017 I decided to start an educational blog about epilepsy which swiftly became Epilepsy Sparks; featuring people affected by epilepsy: those with the diagnosis, carers, neurologists, researchers, scientists, and more, and today I speak at symposiums around the world to bridge the gap between all.

I’m here to educate the masses for the benefit of those who are not able (or for whatever reason, willing) to speak for themselves, and indeed for the many millions around the world who have a diagnosis of epilepsy but don’t know much about it.

Background

As a person with “regular” temporal lobe epilepsy1 and as someone who was just trying to get on with one’s life, I hadn’t ever heard of the rare and complex epilepsies.

Who has heard of Tuberous Sclerosis2? Or CDKL53? Or Ring204? If you have – I take my hat off to you! Prior to my involvement with EpiCARE5 I hadn’t heard of any of these types of rare and complex epilepsies – the research into which has now identified approx. 130 rare diseases (and counting!)6. I wish that I’d read about/heard of the rare and complex epilepsies sooner (thank you so much to Allison Watson7 for introducing me to this world!).

The set-up

The EpiCARE European Reference Network5 (ERN) is an EU funded body which was set up to collate the scarce, reliable, cutting-edge clinical knowledge8 about the rare and complex epilepsies from all around Europe in order to make it accessible to healthcare providers. After all, a person should receive as accurate a diagnosis and treatment advice, no matter their EU location.

In addition to the above, there is the EpiCARE European Patient Advocacy Group5 (ePAG) which involves patient representatives and related charities (if you know one: get them to contact us9!); getting us together to have the patient voice heard and taken into account regarding treatment and care. Of course, we are essential because the rare and complex epilepsies are more than just a diagnosis and treatment – patients and carers live with their rare and complex epilepsy 24/7.

How I relate

Since becoming a member of the European Patient Advocacy Group for EpiCARE, I’ve learnt how much in common I, and millions of others with a general epilepsy have with those with the rare and complex epilepsies. Don’t get me wrong – I am very conscious that we have differences, but we all take Anti-Epileptic Drugs10 (AEDs), lots of us have refractory epilepsy11, many of us have mental health issues and sleep disorders12 (and often need to take drugs for those too), lots of us have cognitive impairments13 or/and a learning disability14; and our loved ones worry.

When you have a rare disease, the loneliness felt by both those with the diagnosis and loved ones can be overwhelming. That’s why, back in November (2019) I did a keynote speech15 on depression for the Tuberous Sclerosis Association16 in Nottingham. I spoke to many families, carers and people with Tuberous Sclerosis (TS) and together we said: “We have so much in common!”. I’m so, so very lucky to not have brain tumours (or indeed any other type of tumour), but, around 80% of people with TS have epilepsy17 – and so do I. Some people with TS have neurosurgery – as have I had. Lots of people with TS experience depression18 – as do I. Lots of people with TS have negative side effects of AEDs19 – as do I have. Lots of us also had a laugh about things other than TS, epilepsy or mental health – and this I think is so, so very important! People smiled and friendships were built.

You are not alone

What I’ve gathered from several other ePAG members is that they really, really appreciate knowing that they are not alone. That they are not the only ones struggling to cope with seeing the one they love experience such an awful illness(es) which can’t yet be cured. That they are exhausted from the lack of sleep, the stress, and their own consequential illnesses. That they must revolve their lives around their loved one who has the rare and complex epilepsy (plus everything else) and they do love them to the moon and back, but life is so unfair for both parties. And it is.

ePAG members bring together personal experiences and those of other families affected by the rare epilepsies to the attention of EpiCARE and influence change. We take the time to learn about each members’ rare and complex diseases and the challenges that they bring (including physical, physiological, neurological, psychiatric, social, and economic), then advocate for all! We give families a voice – and will do so even better with your support: let’s work together! Email us for more information!

What I’ve gained so far

  • I’ve met some wonderful people in both the ePAG and the ERN from around the EU; all of whom take serious time out every week to contribute (in addition to their regular workload). Each time I think of them and their families, I am inspired;
  • I’ve started doing talks with rare epilepsy organisations and met some wonderfully inspiring people in the process with whom I’m still in touch!
  • I’ve added a “rare epilepsies 20 section to the Epilepsy Sparks website21 to encourage awareness – and the list is growing! Epilepsy Sparks has now even become a Friend of Rare Disease Day22!
  • I’ve identified a personal interest in genetics, epigenetics23, and mutations – e.g. how one or both biological parents don’t have to have a certain gene mutation to pass on to their child but how the gene can mutate in the foetus. It’s so interesting!

Ready, Set….

If you are, or if you know anyone who is affected by a rare and complex epilepsy, then please join us on our journey of caring, learning and empowering! We know that rare and complex epilepsies can be much harder to diagnose than the general epilepsies, the AEDs are much less likely to be effective, the comorbidities24 occur at a higher rate, and more. We want you to know that you needn’t feel as alone in what you are going through.

Go!

Torie Robinson

Keynote Speaker & CEO of Epilepsy Sparks

References:

  1. Epilepsy Foundation: https://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy-aka-tle
  2. Tuberous Sclerosis Association: https://tuberous-sclerosis.org/
  3. CDKL5 UK: http://www.curecdkl5.org/what-is-cdkl5/what-is-cdkl5-2/what-is-cdkl5-disorder/
  4. Ring20 Research & Support: https://ring20researchsupport.co.uk/knowledge-base/
  5. EpiCARE: https://epi-care.eu/epag/
  6. EpiCARE: https://epi-care.eu/
  7. Ring20 Research & Support: https://ring20researchsupport.co.uk/about-us/
  8. EpiCARE: https://epi-care.eu/diagnostics/laboratory-investigations/
  9. EpiCARE: https://epi-care.eu/contact-us/
  10. NICE: https://bnf.nice.org.uk/treatment-summary/epilepsy.html
  11. Web MD: https://www.webmd.com/epilepsy/refractory-epilepsy
  12. Epilepsy Research UK: https://www.epilepsyresearch.org.uk/category/conditions-related-to-epilepsy/
  13. BMJ: https://jnnp.bmj.com/content/84/9/e1.6
  14. NHS: https://www.nhs.uk/conditions/learning-disabilities/
  15. Tuberous Sclerosis Association: https://tuberous-sclerosis.org/big-day-2019-event-guide/
  16. Tuberous Sclerosis Association: https://tuberous-sclerosis.org/
  17. Tuberous Sclerosis Association: https://tuberous-sclerosis.org/tsc_affects_the_body/epilepsy/
  18. Neurology Advisor: https://www.neurologyadvisor.com/topics/epilepsy/use-of-mental-health-services-should-be-encouraged-in-tuberous-sclerosis-complex/
  19. https://www.nhs.uk/conditions/epilepsy/treatment/
  20. Epilepsy Sparks: https://www.epilepsysparks.com/Other-organisations/org_rare_epilepsy
  21. Epilepsy Sparks: https://www.epilepsysparks.com/
  22. Rare Disease Day: https://www.rarediseaseday.org/friend/2017
  23. What Is Epigenetics: https://www.whatisepigenetics.com/fundamentals/
  24. Epilepsy Foundation: https://www.epilepsy.com/learn/professionals/joint-content-partnership-aes/epilepsy-comorbidities
  25. EpiCARE: https://epi-care.eu/members-of-epicare/
  26. Twitter: https://twitter.com/EpiCARE_ePAG
  27. Facebook: https://www.facebook.com/epag.epicare/
  28. LinkedIn: https://www.linkedin.com/company/epicare-epag
  29. EpiCARE: https://epi-care.eu/contact-us/