CEP/HEP Help
 

Hello, I have been diagnosed with Porphyria for about lets say 16 years. I cant remember the exact date. Any how I just recently had a flare up and I've been trying to explain it all to my Fiance who has only seen me with a flare up once before. Its stressing her out and I've been trying to explain to her how it all works and how to deal with it. Of course with only a few more weeks to our wedding this is just a nice add on. I have explained to her the basics but with this flare up she want to get more in depth. Which for me is kinda hard because the last time I really went in full detail it was a half hour slide show with a bunch of Medical students at a medical center near here. So I've been trying to explain but I have realized with her its not sinking in. Do I just keep beating it into her head or should I try the more "children Friendly" approach? I wish I still had that slide show I think that would have helped.

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.