Welcome to DU! The truly grassroots left-of-center political community where regular people, not algorithms, drive the discussions and set the standards. Join the community: Create a free account Support DU (and get rid of ads!): Become a Star Member Latest Breaking News Editorials & Other Articles General Discussion The DU Lounge All Forums Issue Forums Culture Forums Alliance Forums Region Forums Support Forums Help & Search

Chronic Health Conditions Discussion and Support

mopinko

(72,054 posts)

3. yeah the root word is purple.

Reply to womanofthehills (Reply #2)

Wed Jun 19, 2013, 08:17 AM

Jun 2013

pee turns purple or dark brown in the sun.
that "only when you are having an attack" part is what makes this so hard to find.

but kiddo had a lesion biopsied the other day, so hopefully we will know soon.
the bad part is they told her she would have to go to mayo clinic for treatment. that is not so terrible except that she was there last year, and we were not happy. both of us thought that they treated her like it was "all in her head" once they saw she was on psych drugs, and been hospitalized.
i suspect that is pretty common for sufferers. if the disease doesn't get you, the docs will.

Edit history

Please sign in to view edit histories.

Recommendations

0 members have recommended this reply (displayed in chronological order):

8 replies

= new reply since forum marked as read

Highlight:

porphyria? [View all] mopinko Jun 2013 OP

Get a name, find the foundation Warpy Jun 2013 #1

I've heard of some vets having porphyria womanofthehills Jun 2013 #2

yeah the root word is purple. mopinko Jun 2013 #3

She has a diagnosis now--it's not the most common thing in the world, but not impossibly rare either MADem Jun 2013 #4

nothing like a biopsy. mopinko Jun 2013 #5

I wish her a return to health and a cure for her condition. MADem Jun 2013 #6

My daughter has Acute Intermittent Porphyria. freebrew Mar 2014 #7

tests came back negative mopinko Mar 2014 #8