PFS Patient Story: Romain
It is hard to imagine that when we bring our children into the world, that all these dreams we have formulated for them, this hope of seeing them grow, build themselves up, and settle down… can be destroyed by a simple hair treatment. How can you imagine that your son, so full of life, curious, funny, a party-goer, athletic, enterprising, and altruistic, could gradually sink into a world of pain, lose his bearings, his capacities, and his vital energy because of a small pill presented as revolutionary, safe, and sometimes prescribed with disconcerting ease, without further examination?
It is called Propecia and entered Romain’s life at the end of 2010. As time went by, he began to experience episodes of intense fatigue and pain in the lower abdomen. The doctors, including the prescriber, all stated that these ailments were related to the stress caused by his studies.
Naturally confident, he thought they were certainly right, even though the symptoms persisted. He was able to pass his exams, get into the university he wanted, and forced himself to continue his life as a young man despite everything. As time went by, his concentration difficulties became more pronounced, as did his libido worries, and he began to tell me that something was wrong, that perhaps there was a connection with his treatment, that it was becoming difficult to pretend that everything was fine. After asking around, he found out he wasn’t alone in this situation and stopped using the product. There was then a period of a few weeks until the unexpected accident where the old symptoms reappeared, accompanied by a myriad of new side effects such as multiple allergies, muscle weakness, severe headaches, and stomach problems.
After a brief moment of doubt and anger, it was time to come together and face the situation as a family, fully mobilizing so that he could regain his health. Naively, I believed, like many perhaps, that every illness has its remedy. We consulted many specialists, mentioning the molecule that practically none of them knew, and many had to refer to medical references like the Vidal and seemed surprised that it was prescribed for this indication. Analyses and examinations each time revealed very surprising results for his age. Some health professionals tried to help Romain with allopathic or natural medicine treatments, while others, and this is terrible, did not try to understand more and simply stated that it must be psychological! Let us remind ourselves that such remarks can also have significant consequences.
Romain believed for a long time that he would be stronger than this affliction, clinging to his dreams as long as his great strength of character and courage kept him upright. He wanted to do the impossible — graduate, build a career, and start a family. He managed to pass his final exams and secured a job in London for the following year. This last year has been terrible. I won’t go into details, but we witnessed him gradually fading away, only able to receive our love and presence, trying to keep smiling despite our fears, despite our own pain until that day on June 7, 2016, when Romain left to discover a world without suffering, leaving us his famous letter and many heartfelt words.
It must be very difficult for others to imagine the flood of thoughts that cross our minds at such a time. It is difficult to grasp, to understand, to glimpse the pain that we will have to tame in order to continue on a path that will often see us stumble. It is difficult to face the realization that nothing will ever be the same again, that our lives will no longer have the same meaning, that our hearts and minds have been scarred, and that if reconstruction is possible, it will be a long journey. Contradictory ideas, impulses, and guilt collide, but there is no time to dwell on them, because the police investigation and the autopsy will soon come, and we will not see him for a week. And of course, we have to announce the news, answer questions, and organize a farewell that reflects his spirit.
What would my son have wanted? That I would fight for him and for his companions in misfortune, as he liked to call them. It was inconceivable, and this feeling remains to this day, that my child, Marion’s brother, suffered so much and left us in vain. But how could I make this experience useful to others? We must transcend our anger and move forward.
Quite simply, we started = a group of victims called AVFIN (Association des Victimes de la Finasteride et autres médicaments de santé capillaire).
Over the last few years, our commitment has enabled us to compile hundreds of stories, regularly exchange with health authorities, doctors, specialists, and other associations. Some progress has been made, alerts have been issued, and warnings have been added. Our objectives remain the provision of information, consumer prevention accompanied by accurate diagnoses, recognition, and care for victims because indeed any medicine can have harmful effects, but it is essential to seek and find adequate solutions to help them regain their health.
There would be a lot to tell about this painful and exhausting journey, marked by encouragement, condescending speeches, gratitude, criticism, and sometimes insults, but also rich in lessons, encounters, and discoveries. Perhaps one day…
In any case, I believe it is important to remember that loopholes may be present in the promotion of a drug, that tensions may exist between health interests and commercial profit, that therapeutic standards may be compromised, and that prescribers and many decision-makers may be influenced. All of these dysfunctions can lead to cruel and sometimes extreme situations, and it is high time that the voice of the victims was heard and respected, that shame was no longer their companion, and that all those involved took responsibility.
Romain once wrote to me, “Mom, this failure is not ours.” No, indeed it is not!
