Last reply 4 months ago
Ukrainisn community of MS

Good evening! It is a great pleasure for us to know about your activity in multiple sclerosis in your country! We are new community of MS in Ukraine and want to get information about this problem from abroad. “Sanofi” company recommend us to discover your activity in this sphere.
Now we have more than 20 000 patients all over the Ukraine, it is one of the most common disease among young people in our country. And we want to establish connections with foreign patient’s organizations, know more about your system of treatment. We would like to join your community, what we have to do for this!
Looking forward to your letter!
UCMS

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grandma
5 months ago

Hi and welcome. We are all individuals, but Shift is a great organisation, we all communicate with each other via this forum, to share information, ask questions, make jokes, moan, cry, celebrate, but we can ask each other anything, somebody will know the answer. We share info on DMT’s, diagnosis, symptoms, benefits, anything. Huge range of ages here, types of ms, experiences etc., and remember, with ms, there’s no such thing as a silly question😜🤙❣️


stumbler
5 months ago

Hi @ucms_organization and welcome.

Shift.MS is an inclusive, international peer support forum, so you are more than welcome to participate and share our experiences. 😊


highlander
5 months ago

@ucms_organization
Welcome aboard!


grandma
5 months ago

@ucms_organiszation you’ve had a few days now to find out all about us. Do most of your members know about us? Anyone with the right equipment can get in touch with us individualy, most of our laptops these days have an interpretation app, so even language shouldn’t be a problem. Look forward to hearing from you😜👂


ucms_organization
5 months ago

We are discovering your activities. We’ve heard about your organization mostly from your website and “sanofi” of course, it will be very interesting for us to know how can you get necessary treatment. You know, we have huge problem with right medicines in Ukraine. Then tell me smth about methods of rehabilitation, please, we don’t have such a meaning for ms.
We are happy to become a part of international community)))


grandma
5 months ago

I think @stumbler & @dominics its over to you, you know far more about what DMT’s might be available and what they might be able to source in the Ukraine?


dramaqueen
5 months ago

We have the MS society who produce a magazine called pathways and another magazine available is opendoor all the info is on the web to contact. But welcome to our site lets hope we can help.


dominics
5 months ago

@grandmma – Good grief! Not sure on the licensed DMTs and any treatment protocols in the Ukraine. Very wobbly up here on the pedestal!

@ucms_organization – a very warm welcome – and as Google Translate tells me: Привіт і ласкаво просимо 😉

To help you better I’d like to try and understand a bit more about how things are for you today.

Is this article – https://en.wikipedia.org/wiki/Healthcare_in_Ukraine – a good representation of healthcare in the Ukraine today?

Please can you describe what happens after a patient is diagnosed with MS?

It seems that Novartis [Gilenya (fingolimod) ] and Sanofi [Alemtuzumab (Lemtrada)] and [Aubagio (Teriflunomide)] are the only companies with any offerings in Ukraine. These are some of the highest rated treatments for MS at present but having skilled clinicians is crucial, especially for Alemtuzumab as it is an infusion (an all day injection).

Sanofi also support https://www.theworldvsms.com/are-you-vs-ms/?override=1

If you want to know anything then it helps to be really specific so people here can give you the best answers.

All the best,

Dominic


dominics
5 months ago

This is a really good source of information from a US Neurologist:-

https://www.youtube.com/channel/UCkQopiiFbAo0zS_9BmRF3Bg


stumbler
5 months ago

I don’t think I can add much to the comments above from the adjacent pedestal. Thanks, @dominics


edmontonalberta
5 months ago

@ucms_organization

The thing to note is that there is NO “one size fits all”… There are 4 types of MS; their effects are usually similar, yet different. The treatments are different. Some countries have a great medical support system while others not so much…

shift.ms members are at different ages & going through a different stage of life, marital status, MS effects, etc… For example I have lived at least 75% of my life, happily married with no children. My perception (and knowledge) is different than a young woman starting off in life concerned about education, a relationship, children, etc…

When a personal situation / question is properly worded in a post, shift.ms members come out of the woodwork to assist. There are no medical professionals posting; just regular people as most of your MS community members are… And believe it or not, we don’t always agree since our personal situation & knowledge base is not always the same… 😉

Hope this helps…


ucms_organization
5 months ago

We have a difficult situation in the country. First, multiple sclerosis is difficult to diagnose. Before the diagnosis and the first pulse therapy, people may lose some functions of their body. Although there are protocols for treatment in Ukraine, only some doctors know and adhere to them.
Further, after diagnosis, a person faces the problem of supportive care. Ukraine does not supply the latest drugs because of their high price, therefore, it is necessary to use Ukrainian generics, which, as practice shows, is absolutely not effective. As you understand, the risk of disability increases at times.
And it’s still a good thing when people understand the importance of drugs and try to get everything at their best. Most patients lower their hands and are treated with non-traditional medicine. Consequences are severe. One of our tasks is to show the necessity of disease-modifying therapy in the treatment of multiple sclerosis.
The lucky ones also fall into research programs. At the moment, this is the only chance to get high-quality treatment for free.
Government does not pay attention to our needs, the problem is that the people themselves do not report about them.
So we decided to create a community that would protect the interests of patients with MS at all levels. We want to get your support, share experience, participate in trainings and conferences (both ours and yours). We are open to new knowledge!


stumbler
5 months ago

@ucms_organization , there is definitely strength in numbers.

I wish you well in your campaign to increase awareness and empower MSers in the Ukraine.


dominics
5 months ago

@ucms_organization

Have a look at the following:

https://multiple-sclerosis-research.org/barts-ms-charity/

I have notified them about your postings on here and shared your description of the situation with them. Address your enquiry to Professor Gavin Giovannini, although he will most likely pass it along to another person.

Best,

Dominic


dominics
5 months ago

@ucms_organization – I was thinking about your reply.

Do you have a website?

Have you considered writing a formal letter to the Medical/Country Directors of Novartis and Sanofi in the Ukraine?

In this, you outline the issue and your desire to understand what clinical trials are active, what is being planned and what support they can offer to your organisation.

Here are the details for the Novartis one, a Manana Gamisoniya General Manager at Novartis Pharma Services AG – https://www.linkedin.com/in/manana-gamisoniya-19576532/?originalSubdomain=ua

I understand the sensitivities that surround Russian involvement and presence in the Ukraine so please excuse me if you don’t like this: http://www.emsp.org/member/all-russian-public-organization-rpo-of-disabled-pwms/

MS doesn’t care if you are Ukranian, British, Canadian, American and so on so there may be some useful information regarding drug trials on the Russian MS Society website.

All the best,

Dominic
Here is the Sanofi one, a Maciej Trybulec General Manager at Sanofi Pasteur Sp. z o.o. – https://www.linkedin.com/in/maciej-trybulec-60638841/

If I Google MS in the Ukraine I get this: https://www.google.com/search?ei=aXeTXKxEx4LV8A-lk7_QDQ&q=Multiple+Sclerosis+in+the+Ukraine&oq=Multiple+Sclerosis+in+the+Ukraine&gs_l=psy-ab.3..0i22i30l2.16580.26000..26377…0.0..0.156.2795.28j5……0….1..gws-wiz…….0i71j35i39j0i67j0i131j0j0i131i67j0i20i263j0i13j0i13i30j0i13i5i30j0i8i13i30.tYua1UFzj2s

I do not know the social conventions: I tend to just get in touch with people. Looking at all those papers there will be authors on them so you can imagine that they have an interest in MS in Ukraine so you can approach them through their Universities or Hospitals.

 


grandma
5 months ago

@dominics Very pleased that someone with ms in this country might help someone else with ms in another country through their knowledge and experience. After all it doesn’t cost anything does it!👍


dominics
5 months ago

@grandma – all done sitting at my desk at home. A pretty nice set-up as I wrote my entire Masters thesis here!

Now it is a bit of Googling. It allows me to break-up the often tedious process of job-hunting. When I do get a job I give you back the pedestal you put me on 😉

I am also writing a 4 part series for the BartsMS blog on patient experiences of DMT initiation – at the time of choice – and some of the other, often hidden, social aspects that seem to be overlooked.

Gah!


dominics
5 months ago

@ucms_organization – Prog G replied to me. I give you a copy:

>>
Dominic

A successful off-label prescribing programme requires a local champion to make it work. Is it possible to ask some these MSers on shift.ms if they can identify a local champion who we can discuss off-label prescribing with?

Klaus, has prepared an information pack for sc cladribine, which they could translate and use. But unless it is taken up by a local neurologist nothing will happen.
With best wishes

Gavin

Gavin Giovannoni, Professor of Neurology

Blizard Institute, Barts and the London School of Medicine and Dentistry

Queen Mary University of London, 4 Newark St, London, E1 2AT
<<

So what Gavin means by a local-champion is a Ukranian Neurologist that supports you guys and is willing to work with Barts (a hospital) in London to help with the right drugs. Without medical support, you will not progress very far.

To get the right information you’ll need to email this man:

Klaus Schmierer, PhD FRCP
Reader in Clinical Neurology
Queen Mary University of London // Barts Health NHS Trust
Office: The Blizard Institute, 4 Newark St, London E1 2AT

If you send me a private message – I have sent a Friend Request to you – then I’ll give you his email.

All the best and let us know how you get on. We’d love to hear.

Regards,

Dominic


ucms_organization
5 months ago

I will learn the information that you sent me! So far we have no site, we have included it in the project and we are waiting for financial support from the pharmaceutical companies. But very soon we will have a page on facebook, I will have a link right away.
By the way: soon a day of multiple sclerosis, do you have any special name for the event? Now we plan it, so we want to show that such a disease exists in Ukraine.

I’ll take a look at your links) thank you, we will think.


vixen
5 months ago

Hello @ucms_organization, welcome to Shift. Don’t forget to plot yourselves on the map function, so we can see where you are! We all have no choice with this horrible condition, but we can choose to support one another, so I hope you find this site helpful


ucms_organization
4 months ago

We were trying(
Can you, please, help us? We don’t know how to do it
Well, we want to tell you that we created yesterday the new fb community. Absolutely new and now we need to develop. Because od the
Lack of money yet’ we want to spread info without pr agencies. Do you know how to do it? Can yousupport us?

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