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About the very personal and most important

The Ostrova Charitable Foundation is proud to present a new publication for adolescents with CF and their parents — the booklet «About the very personal and most important.» In a delicate but thorough manner, it covers the sexual life and health in CF.

Everyone lives to be happy. Cystic fibrosis is not a final sentence and not a hindrance to a happy life with all that it offers — romantic and sexual relationships, having family, and children. Indeed, thankfully, these days we know for sure that generally, people with CF are fertile. However, as CF changes the person’s physiology, you should take greater care of your reproductive health from an early age.

What do young people need to know about themselves? What is worth knowing about hormones, anatomy, physiology, and emotions? What sides of your body life are affected by CF and what aren’t? What should be done and when to prevent or smooth its effect? What doctors you should see, when and for what purpose? How can you make sure the development is going properly, and when you should be worried? What are the risks of giving birth to a child with CF, how the pregnancy should be planned, or how to make sure it doesn’t happen when you’re not ready? The authors tried to cover all the most important issues and give truthful answers and specific instructions for both young men and women.

We hope that this booklet will encourage strong, reasonable, and educated optimism in its readers: indeed, there are special aspects and risks, but on the whole, a grown person with CF can lead the same colorful romantic life as the one without the disease. If your child has CF, don’t let things get you down: remember that your child will eventually grow up to have the same life as other people, and you are very likely to become a grandparent someday.

The booklet can be downloaded from our website in the Library section. To get a printed copy free of charge, please send us a request at ostrovaspb@gmail.com.

The booklet is in Russian and it has been prepared by the Ostrova Charitable Foundation based on the original Australian publication issued by the Centre for Adolescent Health, Royal Children’s Hospital, Melbourne. It’s been 4 years of painstaking work since the project launch to the booklet publishing. We’ve preserved the original structure but rewrote several sections to adapt them to the Russian context. 

We wish to thank the team of authors under the editorship of Olga Pylaeva and Olga Poletaeva, and the team of medical advisors: professor Olga Igorevna Simonova, MD, Ph.D., Aleksandra Vladimirovna Orlova, MD, Ph.D., and Svetlana Afanasievna Repina. Original cartoons are drawn by Olga Yavich, an illustration artist.

To avoid misunderstanding, we also have to admit an inaccuracy that has crept in the booklet during page-proofing: by an unfortunate mistake, the female anatomy section has been missing from the Contents. However, you’ll still find it in its place in the Female Anatomy and CF on page 12.