- Multiple sclerosis is not about memory and not just for the elderly
- Multiple sclerosis is a disease where the cost of lost time can be too high
- Medicine, food, wheelchairs, walkers, legal assistance – the main requests from the sick
- The website of the charity fund 99 PROBLEMS
We learned about the charity fund 99 PROBLEMS when its representative approached us with a request for free hosting and domain for their project. Back in April 2022, we announced our readiness to provide free domains and hosting to budgetary government institutions, and over time, this offer began to extend to volunteer and charitable organizations.
After taking a closer look at the fund's work, we realized that these are the people who should open a new section in our blog.
In this article, we not only want to tell you the story of our users but also help in their mission to dispel harmful myths about multiple sclerosis and spread information about the fund among those for whom it may be important.
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The charity fund 99 PROBLEMS was established in 2020 by three founders - Alexey Sereda, Maryana Pirozhok, and Anton Kulagin, who also have disabilities due to multiple sclerosis. In 2021, their initiative was officially registered as a charitable organization.
You can get acquainted with the founders and the history of the fund in this video:
In their work, they see informing both the sick and the surrounding people as an important mission. After all, there are quite a few myths and gaps in knowledge about MS, which can lead to additional difficulties for people dealing with this complex and incurable disease due to society's lack of awareness. In addition, activists help those in need with food, medication, legal issues, wheelchairs, and walkers.
Multiple sclerosis is not about memory and not just for the elderly
The name of the fund 99 PROBLEMS symbolizes the 99 problems that people with a diagnosis of multiple sclerosis face. We asked representatives of the fund to tell us about the myths associated with this disease:
— Of course, first of all, this is the myth about memory because many people consider sclerosis as memory problems, – says the founder of the fund Alexey Sereda. – Also, our "drunken" gait and speech often cause misunderstanding among others who are unaware of these symptoms. Many patients mistakenly believe that treatment with folk remedies can have a significant impact on their condition. Of course, it can, but not for the better. We constantly talk about the importance of treatment with disease-modifying therapy (DMT) from the moment of diagnosis.
Many people associate the words 'multiple sclerosis' with an elderly person who constantly forgets everything. But this is far from true. Here are a few facts that may surprise you – and at the same time, help you learn more about this diagnosis:
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In English, the disease is called Multiple sclerosis, where 'multiple' means 'many'. This means that MS has many different symptoms and problems, and they can vary from person to person. In our tradition, we use the word 'multiple,' which confuses people. It does not convey the essence of the diagnosis, so the founders of the fund try to promote the correct and understandable term – 'multiple sclerosis'.
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The average age of patients is 20-40 years old. This means that this disease more often affects young people.
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Multiple sclerosis is incurable and in most cases leads to disability. The exact causes of multiple sclerosis are unknown, but scientists have identified many risk factors that can contribute to the development of MS, including genetics, infection, and a history of other diseases that can act as triggers for the onset of MS, demographic characteristics, and the environment.
However, at early stages, it is possible to treat symptoms and model the disease, which can help delay or even avoid disability.
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Multiple sclerosis is the leading cause of disability in young people worldwide.
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It is an autoimmune disease that affects the brain and spinal cord, as well as the optic nerve. It causes seizures and spasticity, panic attacks, depression, and constant pain. For many patients, this means losing the ability to walk, talk, or even hold a spoon. This leads to the inability to work and earn a living and the need for expensive medications.
Read also: How to adapt a site for people with visual impairments
Multiple sclerosis is a disease where the cost of lost time can be too high
It is indeed a frightening disease that can be somewhat alleviated by seeking medical attention at an early stage. Our people often ignore mild pain or subtle symptoms, postponing a visit to a specialist until the last moment, until it becomes really bad. This is a case where lost time can lead to very rapid disability.
The first symptoms that may indicate the onset of MS:
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Prolonged chronic fatigue.
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It seems that there is double vision.
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Worsened or completely lost vision in one eye. At the same time, there is pain when moving the eyeball.
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Awkwardness in movements, worsened balance.
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Weakness, stiffness in the arms and/or legs.
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Regular dizziness.
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Unpleasant tingling in the back.
If you have noticed one or more of these symptoms, urgently consult a doctor. If you have learned that such symptoms are present in someone close to you, convince them not to postpone a visit to a specialist.
Medicine, food, wheelchairs, walkers, legal assistance – the main requests from the sick
Since the start of official operations, the fund has helped with 430 requests, and there have been about 60 requests for official registration. Those in need have been provided with 16 wheelchairs, including one electric wheelchair, as well as 24 walkers and walking frames.
— Most often, people turn to us for help in purchasing medicines or hygiene products. Sometimes they ask for help with buying food. There was also an interesting request for help in buying firewood for the winter (we understand how important this is in rural areas). There are certain personal requests, including legal ones. They are related to the appointment of a guardian, alimony, divorce, and property distribution.
— We are working on improving the provision of therapy to patients through the state program. Since December 2023, according to the Order of the Ministry of Health, Anton Kulagin represents the interests of MS patients in the group of experts and specialists involved in the work of the Ministry of Health of Ukraine's Permanent Working Group on issues related to specialized support for procurement in the directions of 'Medicines for children, patients with cerebral palsy' and 'Medicines for the treatment of patients with multiple sclerosis,' – says Alexey Sereda.
During 2023, the fund sent several dozen requests to state institutions and international pharmaceutical companies asking for help for MS patients with free medications. They provided consultations to people who had just learned their diagnosis and didn't know what to do next.
From the moment of diagnosis to acceptance of the disease, a lot of time passes, accompanied by many associated difficulties. This is hard not only physically but also morally. The fund forms a certain community of people around itself who communicate, support each other, and help in difficult situations.
Often, charitable foundations are created by people affected by the problem - themselves, their relatives, close people. The founders of the fund 99 PROBLEMS found themselves at the very epicenter and experience all the difficulties of the disease, finding the strength to help others.
— On my birthday in 2020, I broke the neck of my femur. I urgently needed surgery, and then my friends, relatives, and acquaintances raised money for such surgery and postoperative rehabilitation for me. It deeply touched me and became a push to help people in difficult circumstances, – said the founder of the fund Alexey Sereda to us.
To better understand how people with MS live, you can watch a video from Alexey Sereda, where he talks about how he works, copes with the difficulties of the disease, and how challenging it can be to leave home.
The website of the charity fund 99 PROBLEMS
The fund's website was launched on the domain 99problems.org.ua in December 2023. Before that, the fund was represented on Facebook, Instagram, and YouTube. After reviewing the website and social media accounts of the fund, you can see how much time and effort is invested in them - activists provide detailed reports of their work, post photos and videos, write news and messages.
During the organization's work, its leaders have established cooperation with many public organizations and commercial structures, such as Nova Poshta and the Icelandic organization MS-félag Íslands, which also helps people with multiple sclerosis. We are pleased to be in such a company and to know that Cityhost has also been able to benefit those in need.
And it's really cool to realize that there are many people in the world who help others simply because they need to. If you know someone who has been diagnosed with multiple sclerosis, pass on this information and the link to the 99 PROBLEMS website and social media to them. Perhaps this will be the very lifeline that this person needs right now. If you have the opportunity, pay attention to the 'Help Now' button on the website.
Every year in May, the whole world marks World Multiple Sclerosis Day. On this day, events are held to raise awareness about the specifics of this disease. The symbol of this day is the orange ribbon, which you can see on the banner of this article and on the 99 PROBLEMS website.
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