Organization of the AMAVEA association
Presentation of Amavea, a support association for people who have taken Androcur or other progestins such as Luteran and Lotényl and suffer from meningioma
Know us better
AMAVEA ( A SSOCIATION M ENINGIOMS due to the Cyproterone ketate, Aid to the vi ictures and taken into account of the molecules ) is a national association, law 1901. Indeed, the questioning of molecules acetate of cyproterone ( Androcur ) and related ( lutenyl and luteran ) in the appearance of meningioma Long neurosurgeons but not from the general public. Women taking these treatments, carrying very common, often do not know this serious side effect. Meningioma is an intracranial tumor. People with this disease sometimes have to undergo heavy treatment, surgical operation, which can lead to consequences and upset their lives.
Why have we founded the AMAVEA association?
Emmanuelle Huet-Mignaton, president of the AMAVEA association
Why did we create an association whose subject is Androcur, other progestins and the link with meningioma? Because we were affected personally by this serious problem. After several years under Androcur treatments, we have developed meningiomas. We, Emmanuelle and Nathalie, we have undergone very delicate operations in order to be able to continue to live thanks to these interventions practiced by experts in neurosurgery.
Noting that the information was very difficult to find on this subject, as much as a medical point of view, on meningioma, on the operation, the consequences, but also on the link with the drugs, on how to ask for the management of the damage suffered, we decided to group all the people affected by the problem and to whom we can provide help and support.
We know it by our own experiences but also, and that upstream of the creation of the association, we worked on the subject in order to better understand it.
Through discussions with neurosurgeons, such as Professor Pallud in Saint-Anne , by prevention work by working with ANSM ( National Agency for Medicines ), by reading and meeting by social networks many people who have developed this disease, today, we know the subject better and better. This allows us to act, with full knowledge of the facts. And to realize that we are not isolated cases. Many people, through their testimony, tell us very difficult routes.
Annie Robert, secretary of the Amavea association
Our objectives: support for people who have taken Androcur, Lotényl or Lotéran and suffer from meningioma
In summary, and you will find these objectives in many pages of the site:
- Collect and disseminate information on the undesirable effects of synthetic progestins and synthetic estrogens with potential or proven victims. • Gather the testimonies of victims to create a support network • Use all the means available to promote the dissemination of information and good care practices . • Facilitate the medical journey of people, their administrative and legal procedures .
Official documents of the association
- Download the AMAVEA statutes
- Download the membership form & don
- Download the publication to the Official Journal
Organization of the AMAVEA association
