Lucie Kout

Project STORIES – Jana

25. January 2024

Today I bring another story to project STORIES. It took me a while, I admit, but the pre-Christmas finishing of the orders took a a toll on me and I had no energy left for my own projects. People mean to do something and life changes it. Here on my site, this story appears first, but in the moment I finish the other series, I’ll put everything in chronological order and I will antidate the posts as they came in sequence. But that is something I will adjust when other series are done, so come on over and meet Jana.

Jana, genetic mutation BRCA

I met Jana about 15 years ago and I would describe her impression on me as a cheerful party girl. She seemed carefree, she was action packed, bubbly, just the kind of girl you’d definitely want to hang out with and you’d know she wouldn’t spoil any fun. But the years went by and a lot of things changed in those 15 years. Jana found a partner and they travelled the world together, she calmed down and also became a mother of three beautiful children. She likes to say that she grew up right in the moment her first child was born. Looking at their family, it seems like there can’t be a cloud in the sky. She’s blossomed and the role of mother suits her incredibly well. She looks like she was always meant to be a mother. Even her social media posts are full of love and understanding. In fact, she is the prototype of the kind of mother that many of us would probably want to be or have as a child

But then what happened was that I published Andrea’s story in STORIES and Jana contacted me that she would like to mix her floral essences called Bach’s essences if she was interested and that maybe she had a story too. So I gave her my ear… When her aunt got sick, her mom started asking why her, and how it was with her mother, grandmother and other women in the family who had cancer. She worked in health care all her life, so she left nothing to chance and created a family tree that indicated recurring illness. When a cousin was confirmed to have a BRCA mutation, almost all the women in the family, including Jana, got tested. She was in her twenties, hadn’t done much yet and was suddenly told she had a very high risk of getting a cancer, especially ovarian and breast cancer. To put this into perspective, the average healthy person has a risk of breast cancer of about 12%. However, with BRCA gene mutations it can be as high as 88%. And this risk also applies to men. In addition, cancer can occur in other organs.

Some of you may remember the media scandal surrounding Angelina Jolie, who carries the gene and whose mother died of ovarian cancer at a relatively young age. Angelina had both her ovaries and breasts removed as a precaution so that she could be there for her children. At the time, a lot of people didn’t understand why she was having her healthy organs removed, it filled the tabloids. Today, thankfully, these preventive surgeries are much more accepted both in the world and here in Czech Republic. It is also possible because Angelina made no secret of her reasons and greater awareness of this mutation has spread. Jana made the same decision. She accepted that it was a good thing that she knows about the mutation and could make arrangements accordingly – to be eligible for more frequent check-ups and to take preventive surgeries that would reduce the risk of cancer to that of the general population. And so, after the birth of her last child, she had her ovaries and breasts removed. At the time of our photoshoot, she hadn’t had her nipples tattooed, but even then she was happy with the result. She said that the breasts, even though artificial, were hers and she was totally fine with it. She didn’t let the joy of life be taken away just because she had to interfere with an otherwise healthy body.

Many women will ignore this fact and see if the disease breaks out or not, some, on the contrary, live in fear from the first moment they hear about it. Others deal with the children and the risk of passing the mutation; some may be worried about passing the mutation, so they either prefer not to have them or undergo artificial insemination with pre-implantation with genetic diagnosticis, which allows a healthy embryo to be selected without genetic burden. Today, medical care in the Western world is at a different level than in the past. Many things can be addressed. And so even those who have acquired the mutation do not have to wait for the disease to break out in order to be “treated”. What about you? Do you suspect you might be a carrier of this mutation? Do you have a family history of cancer, especially at a younger age? You can get tested – your GP will give you the information, or you can read a bit here in CZ language BRCA genes – What are they, why they are tested and what to do if… What time and developments in medicine will bring remains to be seen.

And while Jana and I were taking pictures she brought me to the idea that connects all involved in project ‘Stories’ and those who decided to take this project under their wings. And that is mental health care, which is often inaccessible today. Whether it is the quantity orofessionals, their quality, their workload or their cost. She talked about the kids during Covid, how they struggled with it, and this made me realize that there are times when we all need this type of care. I hope that representatives of organisations I collab with will agree on this type of help and we will figure out a way to help those who need it. The meeting was supposed to take place at the end of the year, but we’ll end up doing it this year. I admit that the pre-Christmas rush did it’s work and I just had to shut down for a while. But for now, don’t hesitate and you can support these organizations individually.

Support Centrum Paraple either by DMS, by paying into an account or by buying merch (they have the perfect Batman limited edition right now)

Support Nadační fond Klapeto (foundation) or if you have a business, you can support Handicap Coffee

And if you can’t support these organizations financially right now, help us out by sharing this project. Because right now, someone is in a difficult life situation and might be happy to read about people who have chosen to deal with their lives in an inspiring way. We want to spread the stories of these people and eventually turn this project into real help. Sharing will help us a lot, and you’ll fix some karma.

If you want to learn more about how Jana sees it, visit her article on Having children on the road – When having children is not the hardest decision aka when BRCA (doesn’t) catch up with you.

Lucie Kout