Petra suffers from a rare disease of "petrified people", but she does not lose her positive mind. "Many people I meet change their outlook on life," she says

When you learned that you had a terminal illness, after the initial shock, what was the main moment that convinced you not to immediately stop "fighting" for your life?

This just sort of came naturally. Sure, I was shocked at first at what was happening, but then I realized that nothing was currently changing for me anyway, because my health was still the same at that point. I had been misdiagnosed with completely different illnesses before, so it just revealed the real name. I just took it as fate. My mind was then more on whether I would be able to have children, whether the disease would get worse, etc.

Did you actively seek information about your illness after that? And did you rely solely on doctors, or did you look for a "solution" yourself, for example by using alternative medicine?

The doctor told me that there are websites where all the information is available, and where I can even meet other people from the world who are experiencing the same thing. I then found a Facebook group where people with fibrodysplasia gather, and then searched for articles and videos myself. In that Facebook group, a lady whose little sister also has the disease found me, and she asked me if I knew Peter Burda from Tap Tap. I didn't even know who he was at the time, but she gave me his contact information and we started writing to each other. The funny thing is that I moved to Uhříněvs eight years ago and he was living here at the time, so we started seeing each other and became friends, which I'm very grateful for.

(Petr Burda, better known as "Stounman", is an influencer, a member of The Tap Tap band and one of those who suffer from fibrodysplasia. On social media, mainly on TikTok and Instagram, he shares humorous videos in which he comments on his disability and everyday life in a wheelchair with insight and self-irony.)

I also wanted to ask about Peter, you were quicker. His approach to life has certainly helped you in many ways...

Yes, we are both the same optimists. We also cry and complain sometimes, but we take it sportingly. It's just the way it is and there's nothing we can do about it.

I'll come back to the Facebook group. How many people are in it? According to what I found, there are only 5 people in the country who have the same disease as you. Are they in the group too?

It's me, Peter, then my friend's sister and one other adult boy. Outside of this group, I know of one other little girl, she's about seven. I was contacted by her mother, but that was only once. She did not take her daughter's illness well at all and I have had no information about her since. So yes, I officially know of 5 people with me.

Can you elaborate for readers who may know Peter from social media but only see the fun, what difficulties do you have to overcome on a daily basis?

There are a lot of limitations, although fortunately there are a lot of things I can do on my own. But sometimes I need the help of another person. For example, I can't reach my head with my hands, so I can't wash it or comb it. Getting dressed is also a bit of a wild ride, so I just wear looser clothes. I don't bend down to my feet either, I use a special sock dresser and I have an unusually long shoe spoon. And I still use steps to get into cupboards that are already too high. But I have a completely customized bedroom and kitchen.

As for the course of the disease, is it similar or different for all of you? Is there anything that the doctors told you for sure would come?

As its name states, it is a progressive disease, so you never quite know how it will progress. Sometimes it's better, sometimes worse, like right now when I'm in severe pain and my body is stiffer than usual. It's very individual, some people live to 5 years, others to 50. There are a lot of factors involved and even the doctors can't tell you for sure what's going to happen next.

Do you try to patiently explain what's wrong with you to people who don't know your illness and react negatively to you?

Depends on my mood. Just today I had a visit from a work colleague who I've never met in person and we don't know each other. She came up to me and said, "You're a bit stiff, aren't you?" But if one is even a little bit interested and in a good mood, I say that I have a certain ailment and I've had spinal surgery. But if it's a case like with the colleague, where one makes some similar comment, I don't address it.

Since you never know what's coming, are you enjoying life to the fullest? Do you try to implement your ideas as soon as possible? Within reason, of course...

I think so. I go to hockey, the theatres, swimming... I have an activity almost every day, I'm often with my family and friends. I even wanted to study at a second university, but because of the high number of applicants, although I passed the exam, it didn't work out. I was told to apply next year. I am currently taking a course in astrology. Sure, there are times when I'm glad to be home and just lying on the couch, like almost everyone I guess, but otherwise I really try to keep busy. So if I leave aside my illness, then yes, I really enjoy my life.

I'm intrigued by the astrology. For me, it's kind of connected to esotericism. Are you also interested in an alternative view of life?

Definitely, I've always been interested in the topics related to that. My illness has only intensified that, so I'm trying to figure out why this is happening to me, what the point of it is. What I see so far is that a lot of people I meet suddenly get a slightly different perspective on life. They see that I am positive in spite of what I am going through, so then they too re-evaluate their relationship to their problems.

Going back to Peter and linking it to your impact on the environment, have you thought about making a video with him or maybe doing some awareness talks?

I've thought about doing outreach lectures, because Peter and I did one this April for students at the college where my friend teaches. I certainly wouldn't be opposed to it, but Peter is very busy right now. As far as videos go, I've even been in a few of his skits, but he does so much that it's bogged down.

Is there anything that could be improved in terms of attitude either from doctors or organisations that help people with various disabilities?

Certainly awareness of the disease could be improved, not only towards society but also towards doctors, because surprisingly not everyone knows about it. I usually have a good experience, but for example, Petr broke his arm during a filming and when he went to the hospital, the doctors and nurses didn't know how to deal with him. I would see this total ignorance as the biggest problem, and then everything else depends on that.

How much do you use the help of those around you? Or do you try to rely on yourself as much as possible?

If I need help with shopping, taking heavy things into the apartment or cleaning the house, I definitely ask someone sometimes, but when it comes to financial help, I definitely don't. I do get Attendance Allowance, so I can use that money to get an assistant, but mostly I rely on family and friends.

Is the financial help from the state enough? And do you think it is more important to increase the benefits or to do more civic education?

This is a difficult question to answer. You can't completely "force" people to help someone. You either have it in you or you don't. Otherwise, it's great that I have a disability pension and some benefits, but if I had to live on that alone, I couldn't even pay my rent. On the other hand, the state isn't here to help me. I'm here for myself. If the state wants to help me, that's nice of them, but first of all it's up to us to manage our lives so that we don't depend on them. And if the state gives you a raise, they have to take that money away from someone else. It's a vicious circle.

Given what you say, I assume you go to work...

I've been working part-time for five or six years at the Transport Company on a part-time basis for less than 4 hours a day. I'm in the HR office, which I commute to by car, but we have the option of doing 4 days a month at the home office, which is nice. I also have a part-time job at a Slovak recruitment agency where I help with interviews, recruitment and advertisements. I'm quite a workaholic, I enjoy it.