I am a young woman with MS, but most importantly, I am a diehard fan of life! I founded the “Life with MS” project, where people find support and much more. I would like to extend the website, complete animated video and introduce a new association.
Author: Vendulka Bočková
Praha, Hlavní město Praha, Česká republika
All or nothing. Project finished on Oct 17, 2016 at 09:09.
“The people who get on in this world are the people who get up and look for the circumstances they want.
And, if they can't find them, make them.” George Bernard Shaw
Originally, this was a small blogging effort which has changed over time. It has gained momentum and mere stories were no longer enough. Therefore, I have added information about multiple sclerosis, and much more (magazine articles, discussion forum, etc.) As time goes by, new objectives have been added to the project and my effort now focuses on awareness and activities. I am trying to be flexible in responding to users’ wishes and needs, but I can no longer do without professional programming.
I’m moving forward, no step back!
The most important objective is redesign of the website, which will bring streamlining and acceleration. At the same time, the website will offer a number of attractive opportunities and activities for all users, not just patients.
The website should become a starting point for the next step, which will be the establishment of an association devoted to encouraging our people to take part in meaningful activities (entertainment, sports, trips, helping nature, animals, children, senior citizens, etc.)
The funding will cover redesign of the website. This includes the programmer, graphic designer, purchasing licenses. The new website should include advertising, consulting, volunteering, including a map of volunteers and those in need. A substantial part will be a separate social network for those who do not wish to declare their disease officially (e.g. using their FB profiles, etc.) These people are also entitled to a place to talk about what worries them without having to fear anything.
60.000 CZK will be enough to carry out our plans for the development of a professional, good-looking and fast website with a large number of user options. Anybody can become a user. Healthy or sick - this does not matter at all. Just a desire to live and to live with us!
Of course the amount will not cover only the website, graphic design and licences. It will also cover completion of an animated video, which shows a story of three young people and breaks down the myths about multiple cerebrospinal sclerosis. This video should be the first major endeavour of the new association.
And last but not least, the funding will cover the rewards for you. These will be delivered as soon as possible.
I have already taken the first step - the project and everything around it will get a new logo
At the moment a lot of things depend on money. No matter how much effort I put into this, professional work requires professionals. But I am just an ordinary girl with very limited possibilities to raise funds required for further development and growth of the project.
Now, you can help our dreams come true so that all patients and their families know that they are not alone.
I am one of the nineteen thousand people in this country who have been diagnosed with multiple cerebrospinal sclerosis. However, the actual number is estimated to be several times higher, because many people overlook and ignore early symptoms.
We are the same as you. You meet us in the streets and most of us are no different. Yet, after injuries, multiple sclerosis is the second leading cause of disability among young adults.
Although many of you do not know anything about us, you knowingly or unknowingly attach a stigma to us, attribute different symptoms to our diagnosis, and force us to live in seclusion, to fear admitting the diagnosis to our employer, friends, and unfortunately often to our family members.
The disease is not about what we hear in the media, it is not about heroic stories on the one hand and depressive mushy stories on the other. As if there was nothing in between. But the opposite is true.
Most of us live a normal ordinary life, and the public must understand that we are no different. And I am trying my best to communicate this “life” among people. And to ensure new patients that their life will not change dramatically unless they themselves allow the disease to dominate over them.
And who am I?
My name is Vendulka Bočková, I am 32 years old, simply I am a young woman who was almost a decade ago diagnosed with multiple cerebrospinal sclerosis. Although over time the disease has put me in a wheelchair, limited motor skills in my fingers and strongly affected my eyes, I have never given up or resigned because in the first place I am a diehard fan of life.
How I taught a dog not to be afraid of the wheelchair. We have practised for this “snapshot” for nearly an hour.
As I wrote earlier, the project began as a small blog, which has grown over time into a website. The original stories changed into informing patients, their families and the public about the disease, which is still veiled in a lot of myths. My effort was to present information in a human language, without terminology in which a normal person gets quickly lost. A great objective was to share ordinary life stories.
Being a patient myself, I notice every mention of the disease. And I have a feeling that multiple sclerosis is sufficiently communicated among the public. But when a young man tells me that he did not get a job because his diagnosis means forgetting (in the opinion of the potential employer), a scatterbrained woman in a market stand comments her distractedness by saying “I think I have that multiple sclerosis”, and a graphic designer, when asked to produce something on the topic, sends a picture of a laughing old woman, it is clear to me that the public still does not have the required knowledge and we still live in a world of myths.
Therefore, I am trying to show to people that this is not what the disease looks like, that this is not what the disease is about. That we are no different, and although we need medicine, rehabilitation, and plenty of rest, we still live an active life and have the same value. Often it is necessary to explain to family members that even though the disease is not visible, it does not mean that we are always well, we just try to conceal it and live on.
To give patients the energy they need, hope, a positive approach to life. To give them a helping hand, to present new possibilities and to show that they are not alone.
“Heaven has given human beings three things to balance the odds of life: hope, sleep, and laughter.” Immanuel Kant
Because you have shown great interest in the paintings by Gabriela Sedláčková, we have added a quintet of her graphic paintings: "I Love The Rain" ("Miluji déšť") "Coral summer" ("Korálové léto") "Stripes" ("Pruhovaní") "Walk the summer with me" ("Projdi se mnou léto") "Step out of your box" …
MoreThe project was also supported by Tomáš Zahálka, an amazing person who runs barefoot in a kilt around our country and supports a number of various activities and organizations with his jogging. You can choose the rewards that were given to us by his sister – a beautiful eBook (only in Czech…
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