Hi,

The pediatrician of my daughter thinks there is a possibility she might have SCLS and would like to come in contact with specialists of SCLS in the Netherlands (or abroad). Her first episode happened when she was 6 years old, which looked like a anaphylactic shock, she was swollen. Last year she had 2 episodes of presumed septic shocks, with one ICU. She is now 16 years old. 
Please let me know if you have got some information, thank you.

Hi,

I know a doctor in Munich, Germany, He speaks English very well.

If you cannot find someone in the Netherlands or abroad, but closer, please contact me via agunsser@gmx.de.

Andreas

Since there are no experts on SCLS in Holland or most countries, my earnest recommendation is that your pediatrician make an appointment for your daughter to be seen by Europe's leading expert on SCLS:

Prof. Dr. Zahir Amoura, Département de Médecine Interne, Hôpital de la Pitié-Salpêtrière, Bd. de l'Hôpital 83, Paris 13e, tél. 0033 1 4217 8001,
email zahir.amoura@aphp.fr, and for appointment information see https://www.aphp.fr/offre-de-soin/medecin/505439/066/04

He is often overbooked and thus hard to see, but he has a younger colleague that she could otherwise see: Dr. Marc Pineton de Chambrun, tel 0033 1 4217 7832, email marcdechambrun@gmail.com, and for appointment information see https://www.aphp.fr/offre-de-soin/medecin/3280725/066/59

To make the eventual trip to Paris most productive, make sure that your pediatrician prepares a summary in English or French of your daughter's medical history, to be emailed ahead of time to Dr. Amoura or Dr. de Chambrun, and/or that she takes it with her to her appointment.

Arturo