I’ve been in touch with the Ukrainian Community of people with Multiple Sclerosis (UCMS). According to their own data, there are 22,000 people with MS living in Ukraine. The UCMS is an associate member of the European MS Platform (EMSP), which sounds frighteningly similar to other “associate memberships” of this large country…
Kateryna from the UCMS just sent me the two videos below. She told me these were made to explain MS to a public audience (video 1) and the importance of medical treatment (video 2) since, in Kateryna’s words: “MS is a disease, where people don’t want to use traditional medicine or not use it regularly”.
Unfortunately, I don’t speak Ukranian, and there are no subtitles. Anybody able and willing to insert subtitles, please drop me a line.
The major problem at this time Kateryna describes is – apart from the terrifying experience of the Russian invasion shared by all Ukrainians – access to clinics and hospitals. She writes: “Our patients now in horrible situation. The big problem is not that we haven’t any medicines, but distributors are afraid to go with them to the hospitals. People need also psychological support and visits to doctors (the majority of doctors now are suffering, as the other people, and not in [their normal place of] work)”.
Disclaimer: The opinions expressed here are those of the author and nobody else.
Like the children shown on tv who are missing out on cancer treatment or insulin as a Type One; this is yet more evidence of the huge impact of the war and it is heartbreaking!
Like many other Brits, I’ve donated money and written to my MP regards refugees etc.
I’m now utilising the large amount of time I need to sit take it easy to do some serious levels of emailing:
Saw a brilliant idea on Twitter to email as many organisations as possible in Russia to tell them about all about what is happening and to say we know they are being lied to and denied access to genuine info. Also that we are sorry that the necessary sanctions will hit them badly, and that the fault is squarely with their leader.
A weak PwMS feeling more proactive and even powerful at thwarting the lack of knowledge in Russia.
Thank you so much Prof K for making the effort to reach out to the UCMS. I’m sure your being in touch means a lot to pwMS in Ukraine.
Words fail me. Everything I start to write seems woefully inadequate. Cannot imagine being there let alone adding in daily challenges of being there with MS. Accessible underground shelter?
I scroll through Twitter liking and commenting in emojis just to let people know we are thinking of them, donate to DEC appeal, despair at our gov’t lack of action re Russian Oligarch wealth (and donations to Conservative party, what’s that about?). Oh and I’m not gonna grumble about minor stuff ‘I miss Kyiv traffic at rush hour’ tweeted one reporter from @kyivindependent.
How the world has changed. Brexit and Trump were minor blips, covid beaten by vaccines and treatments, climate change ongoing. There’s a great cartoon in Private Eye this week. Setting is Hell: ‘Pestilence is exhausted, let’s send War and see if he can do any better’.
Anyone else feel totally powerless?
Totally powerless, I agree.
The best thing that I could come up with was to book a room in Kyiv on AirBnB, to give some money directly to someone in Ukraine.
Anon that’s a lovely thing to have done. There was a lady interviewed on Radio 4 Today one morning who’d done same. Was that you?
Wasn’t me on radio 4, but really glad this is getting publicity. It is something really easy people can do from anywhere around the world.
We are all Ukrainians now.
I’ve started learning the Ukrainian language from YouTube and I would like to help Ukrainian refugees that come to the UK.