We have one member with porphyria... I've contacted her to
visit your threads when she has a chance.

With a really rare problem like yours, there won't be many online here to discuss the details of porph.

But there are many discussions on Chronic pain, about
"doctors in general" and also on several of the forums about living with a chronic medical condition.

How to talk to your doctor, how to live with some restrictions, etc.
So until our porph member logs back on, please feel free to look around the various forums and enter the discussions that seem pertinent for you. Many members here do not commonly leave their home forum locations, and read the intro threads or the General forum here.

Some porph patients develop peripheral neuropathy, and we have a PN forum here:
http://neurotalk.psychcentral.com/forum20.html
There are several threads there about family support, and relationships with a chronic medical challenge.