This website has been made for the Tyrosinemia patients, last but not least the parents as well as everybody who is directly or indirectly concerned by the Tyrosinemia: this hereditary and rare disease of the metabolism which affects less than 100 people in France.
After a lot of examinations, the diagnosis has been given: your baby is suffering from Tyrosinemia.
This little baby you gave life to and you care the most about is affected by an hereditary metabolism rare disease…
Unconceivable, Intolerable… you say to yourself…
- “Is it curable?”
- “How to treat it?”
- “What will be the future of our child?”
- “What will we become?”
- “Whose fault?”
- “Have I done something wrong during the pregnancy?”
- “How is it possible?”
- “Why this happens to us, to our child?”
These questions you asked yourself 100 times, perhaps 1000 times…
“But what is Tyrosinemia?”
Your doctor or your paediatrician explained to you what Tyrosinemia is, but you may not have understood everything, too stunned by these sad and and definitive bad news!
You are in distress and helpless while facing up to this unknown disease. Worried about the future, you have the impression that a disaster has stricken your couple, your family… It’s all the basic scheme of the family which is wiped out by the diagnosis…
ENSEMBLE CONTRE LA TYROSINEMIE UNDERSTANDS YOU…
Ensemble contre la Tyrosinémie understands your feelings: your sadness, your distress, your solitude and maybe your guilt that you felt in that moment.
Helene CHARBONNEAU, the founder and chairwoman of our association Ensemble contre la Tyrosinémie was exposed to the same questions, doubts and solitude 15 years ago.
Stronger thanks to her experience, she wants to say, “YOU ARE NOT ALONE TO FACE UP TO THE TYROSINEMIA, NOT ALONE TO FACE UP TO THIS RARE DISEASE ANYMORE!”
Helene CHARBONNEAU deeply wants to help the patients, their parents and friends.
This website presents the association’s members, the reasons of its creation and the actions made to make known this rare and hereditary disease of the metabolism and the daily life of the patients, and the one of their families.
Pictures are better than words, so we invite you to watch and share this Draw My Life, which summarizes what Tyrosinemia is and the constraints of it…