Magazine

In this first edition, I want to focus on the unpredictability of the disease and how to properly deal with it. All types of Neurofibromatosis come in different forms and progress differently on anybody, so it is difficult to say how it will affect a patient over time. This unpredictability is very challenging for not only the patient but also his surroundings, meaning family and friends. Every doctor’s appointment might bring bad news and that makes all those affected feel very anxious. For this edition, our team talked with the Dutch child psychiatrist Dr. Andre Rietman who wrote his PhD on NF1. We spoke with him on how to deal with the disease, how to manage the insecurity revolving around it and how much room to give to it in your everyday life.
Furthermore, every edition of the magazine will focus on one specific symptom of all types of Neurofibromatosis. In this case, I want to discuss the effects of neurofibromas and specifically plexiform neurofibromas (benign tumours that grow from nerve cells and are found on patients with NF1). The Hero of the Month is Philip Moss, who was also diagnosed with a plexiform neurofibromas at the age of 8. Despite his disease, he managed to lead a relatively normal life, thanks to a new drug that he has been taking. If you want to read about him, click here.

And lastly, I personally want to thank you for your engagement and for subscribing to our magazine. It’s my goal to create a regular interactive exchange with you, therefore I would like you to give me feedback for every edition! Thank you for your support.