Discussion
Loading...

#Tag

Log in
  • About
  • Code of conduct
  • Privacy
  • Users
  • Instances
  • About Bonfire
xeniax ⏚
xeniax ⏚
@Xeniax@mastodon.ml  ·  activity timestamp 2 months ago

Dear Fedi friends.

As some of you may know, I have a wonderful daughter Lila who had a severe form of epilepsy at the age of 5 months. This epilepsy is called West Syndrome.

We had to go through a hell of a treatment to stop her seizures. The thing that helped her was called "Synacthene Retard". It's basically ACTH, a synthetic hormone similar to adrenocorticotropic hormone produced by our anterior pituitary gland.

My daughter was one of the last kids who had a chance to get the Synacthene Retard from the lab that produced it (Alpha Sigma). This was late March 2024. And in May 2024 Alpha Sigma said they discontinued this product without ANY public explanation.

I am trying to inquire about the disappearance of Synacthene Retard from French pharmacies. I am looking for contacts of a medical journalist or an expert in pharmaceutics to help me lead this investigation. It may save lives of dozens of other kids with that suffer from West Syndrome. Thank you!

BakersRelay
BakersRelay
@BakerRL75@m.ai6yr.org replied  ·  activity timestamp 2 months ago

@Xeniax Promoting to #Epilepsy #WestSyndrome

  • Copy link
  • Flag this comment
  • Block

bonfire.cafe

A space for Bonfire maintainers and contributors to communicate

bonfire.cafe: About · Code of conduct · Privacy · Users · Instances
Bonfire social · 1.0.1-beta.35 no JS en
Automatic federation enabled
Log in
  • Explore
  • About
  • Members
  • Code of Conduct