I wrote a piece a couple of weeks ago ready to publish for “Purple Day” but I really wasn’t happy with it. I haven’t blogged for quite a long time and I was struggling to find engaging and helpful content.
Then I realised that, just as last year talking about myself and my own struggle wasn’t appropriate during the pandemic, the same applies this year.
There are millions of people who are experiencing situations far more challenging than my own and more specifically over 250,000 (estimated) people with epilepsy in the Ukraine and those who have fled to surrounding countries who are facing very challenging circumstances right now….not only in the same way that every Ukrainian is, but in addition are having to deal with the extra challenges presented by having a chronic health condition (which can be deadly without medication) in a war zone.
This post is therefore dedicated to those people. To sharing some information about WHY things are difficult for them, and to provide some links with more information and ways in which you can provide support for Ukrainians living with epilepsy right now.
According to the International League Against Epilepsy (2022), addtional challenges faced include:
- Lack of anti-seizure medication and abrupt cessation of treatment
- Potential for traumatic head injuries, premature births, and infectious disease outbreaks, which can all lead to seizures
- Lowering of seizure threshold due to stress, sleep deprivation, and hunger
Supplies of anti-seizure medications are running low and based on previous national disasters, such as hurricanes and tsunamis, the increased mortality rate for untreated, prolonged seizures is over 20%.
According to the ILAE, there is also additional concern for the rights of people with epilepsy who often face increased discrimination, exclusion, and stigma during times of crises (newswise.com, 2022) which is another reason why it is so important these people have access to support.
I don’t want to dwell on my political fears for this group of people but one only has to think about how those with epilepsy were treated during the Second World War by Hitler to worry about what the potential issues for the physically “weaker” echelons of society may be when faced with persecution by Putin.
My intention was not to write a whole post which is basically borrowed information so if you would like more information about what the specific global initiative is and which organisations are working to address it please have a look at the following links:
International League Against Epilepsy
International Bureau for Epilepsy
As explained above, aid has been broken down into seven key areas by these organisations to include things like:
– (this never would have crossed my mind) providing pre-prepared translations of the names of medications and treatments so displaced Ukrainian citizens with epilepsy can easily access supplies in foreign countries when they are given access to medical attention
– fundraising to provide free mobile phones so that they can use facilities like seizure and medication tracking apps (yes, we need those, especially if you take medication three times a day in what could be a different time zone or have regular seizures which need recording).
I’ve tried to investigate if there is a specific way in which you can donate funds which will go directly to people with epilepsy affected by the war in the Ukraine but it appears the best route is following official channels and to donate via the Disasters Emergency Committee, which although isn’t epilepsy specific, is the best route to ensure that funds are directed where they are most needed in the quickest way possible:
https://donation.dec.org.uk/ukraine-humanitarian-appeal
Despite having no real understanding of their plight, regardless of whether they are epileptic or not, much of my waking time is consumed with sadness and compassion for these people, I draw many parallels between the way they are currently living and my own life, and I can’t even begin to imagine what it must be like to try to manage having epilepsy in a war zone.
I hope the resolution is quick, that justice is served and that the loss of human life, especially for the purpose of this post through deaths related to epilepsy, is minimal.