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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Pee in a jar for Lisa


06-20-2012, 09:09 PM   #1
dahlfacepoet
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Pee in a jar for Lisa

Hello everyone Undiagnosed, I am encouraging you to pee in a jar and set it in the sun for 48 hours. My friend, Lisa, has been struggling with illness for a very long time. She is diagnosed with MS and has been able to dx herself with Porphyria. Porphyria is a very rare metabolic genetic disorder. It can cause extreme abdominal pain, as well as symptoms similar to IBS but worse. Lisa peed in a jar and set it in the sun for 2 days, at the end of the 2 days, it turned purple. Yes purple. This can only happen in porphyria patients but it is not a diagnosis. Now Lisa is struggling to find a lab and a doctor willing to test her and treat her for this rare disease. She is high risk for sudden death or coma because her blood pressure and heart rate are unstable. All she needs to become stable is glucose or saline, but many ER's refuse to treat her, claiming she is crazy (porphyria can cause neruo symptoms) and that patients aren't allowed to dx themselves. Well all know no one should have to fight for their life, but Lisa is. She finally got treatment and is not monitoring her own vitals to be sure she doesn't need to return. But she knows if she does it will be a giant fight again, until she can get someone in the medical field to vouch for her.

I would be surprised to find out if you or I did have porphyria, but it is something to rule out. And more than that, I plan to pee in a jar to support my friend. So find an old jar, or a specimen cup and pee in it to place in the sun. If you're in a flare then it should turn within 24 hours, if not it will take longer. If you do have purple pee, take it to the ER. This is more an experiment of hope and urine and friendship and to educate about Porphyria and other rare diseases, like CD or UC.
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