Thank God I found you all today! I have been diagnosed with RP and can’t find much help from doctors here. This has been very helpful because I also have muscle weakness, Raynauds and Sjogrens. What you’ve described sounds like I may have Type 3 RP.
Here is the info: reconnet.ern-net.eu/patients-organisations-rp/ Additional info can be found here as well: reconnet.ern-net.eu/disease-rp/ Hope these links can help.
@Marce Thank you so much for doing this talk. It was especially timely since I recently had my dynamic CT and was hoping it would enlighten us regarding my laryngeal pain. My scan showed pharyngeal inflammation, the trachea looked normal but they did not even mention the larynx.
hi, here is a link where you can find some info about ERN ReCONNET RP centers reconnet.ern-net.eu/disease-rp/ Hope this helps. Stay strong and good luck!
Thank God I found you all today! I have been diagnosed with RP and can’t find much help from doctors here.
This has been very helpful because I also have muscle weakness, Raynauds and Sjogrens. What you’ve described sounds like I may have Type 3 RP.
Thank you for your kind comment!
Is there a patient community for RP?
Here is the info: reconnet.ern-net.eu/patients-organisations-rp/
Additional info can be found here as well: reconnet.ern-net.eu/disease-rp/
Hope these links can help.
@@ERNReCONNET Thank you!
What a compassionate researcher to have in our court, thank you - ❤
@Marce Thank you so much for doing this talk. It was especially timely since I recently had my dynamic CT and was hoping it would enlighten us regarding my laryngeal pain. My scan showed pharyngeal inflammation, the trachea looked normal but they did not even mention the larynx.
My doctor says RP doesn't exist I need a doctor that will help me. My breathing is not good at all I can't do anything.
hi, here is a link where you can find some info about ERN ReCONNET RP centers reconnet.ern-net.eu/disease-rp/
Hope this helps. Stay strong and good luck!