Epilepsy Sparks

To Educate is to Empower: SUDEP Action Day


To Educate is to Empower: SUDEP Action Day

 

To educate is to empower. That is one of my key messages when speaking about epilepsy. Why? Because, the more we understand a condition, the less afraid we feel inside, the better we can become at looking after ourselves, and the more comfortable we feel when speaking about epilepsy amongst others. We also find out that we aren’t alone and that our instinctive anxieties and fears can be rationalised. We are able to think more clearly, look after ourselves more effectively, and think about things other than epilepsy!

Part of learning about epilepsy is learning about SUDEP (Sudden Unexpected Death from Epilepsy). 3 people die each day from epilepsy in UK; with SUDEP being the main cause. Just yesterday I was having a conversation with a Neurologist (we were both presenting at an epilepsy conference in London), where I brought up SUDEP and SUDEP Action Day; asking if SUDEP was something that was brought up with patients. The response was that given that as many patients with epilepsy are considered to be at a low risk of SUDEP (which SUDEP Action and their bereaved families know is sadly not always the case) and given the stresses that many of us already feel, considerations need to be made: weighing up the positive vs the negative impact that informing us may have.

I get it. I understand that some people will totally freak out if they are informed of the risks of SUDEP initially. But, I also know that when patients and carers are informed of SUDEP they can also be advised of ways to minimise their risk: meaning that informing patients and carers can be empowering, rather than so frightening. HOW to have the conversation about SUDEP with patients is what  needs to be established, rather than IF or WHEN.




Some people say that ignorance is bliss, and I do understand where they are coming from. But, is it really? When considering the other people around you? Loved ones? They don’t want you to go. They’d rather you minimise your risk of SUDEP. Thoughts that may be overwhelming worrying initially, can be curtailed by putting preventative measures into place. That is why SUDEP Action Day’s theme this year is #ACT:

·         Ask questions;

·         Communicate, and;

·         Take action

Why not see how you can ACT this SUDEP Action day? The SUDEP Action Day website provides examples of how you can put ACT into a process in real life!

Have that conversation; ask any questions that you may have about SUDEP and find out how you can live safely.

Emily Sumaria was a person who could count the number of seizures that she’d had on one hand and was at university having a fun life. But yet, she died of SUDEP with neither she or her family having  known of the risks. Check out her family’s inspiring journey on a tuk tuk to Turkey; raising money for SUDEP Action



One of the reasons I had brain surgery was due to my increasing risk of SUDEP. My response to the suggestion of surgery by my fabulous neurologists was “gosh yes, if you can, scoop that (hippocampal sclerosis) out!”.

Only about 52% of people with epilepsy in the UK are seizure free, but about 70% can be with the right treatment and advice and so further reducing their risk of SUDEP.

Here are some things, right here, that can be put into place to reduce the risk of SUDEP:

·       Take prescribed medication regularly and reliably;

·       Record your seizures, any change in overall health and lifestyle;

·       Speak to a doctor before making any changes to your medication; 

·       Discuss any lifestyle changes such as having a baby or going to university with your doctor; 

·       Avoid excess alcohol consumption and using recreational drugs;

·       Ensure that you have regular reviews (at least once a year);

·       Tell your doctor if your seizures change in any way;

·       If your medication isn’t working, don’t settle for continued seizures. Ask your doctor what other options there might be. The risk of SUDEP varies from person to person.

                 


Check out SUDEP Action’s website for more information – whether you be a patient, carer, employer, family member or friend, and always remember that you are not alone.

 


 Torie Robinson

    Epilepsy Sparks Founder, International Public Speaker, Consultant & Trainer 

      

 

Comment



Thank you for making these posts. I share them whenever I read them. For what it's worth I commend you highly for what you are doing for all of us who have epilepsy. Thank you again.