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Porphyria by Colin

Julie Gardener

New Member
Porphyria by Colin​

My name is Colin and I have porphyria I am 27 years old and was diagnosed with this disorder at the age of 19, after four years of doctors testing and probing and finding nothing. . I switched doctors and within the next year discovered what was causing my acute vomiting attacks. My porphyrias is corpro or variegate porphyria but acts like acute intermittent porphyria, with violent vomiting attacks that cause hospitalization and IV glucose, narcotics and anti-nausea medication. The attacks last from 4 days to a month.

Through trial and error my doctor, specialist and pain manager have been able to make my life much more livable, but I do suffer from chronic pain and frequent attacks.

I have found marijuana to be a godsend, as eating has become increasingly hard for me. The marijuana helps create the feeling of hunger and the ability to hold down meals. It also helps with the pain and side effects of the narcotic pain relievers I take.

Marijuana has been the most important drug in my sustained ability to maintain some degree of nutrition while also helping to relieve my pain. I have never met anyone with this illness, and as it is so rare the information on this illness is quite often contradictory.

I believe that because there are very few people with this illness and so many ways in which it presents itself, each person's own experience is different.

Every porphyria safe and unsafe drug list is different depending on which porphyria society you decide is the most credible. Most have negative things to say about marijuana, but in my experience it works wonders, and I just would like to know if there are other people like me out there.

If you have any info or studies on medical marijuana and porphyria, my doctors are very supportive and would like any help they can get. I have also been considering a medical exemption to get legal marijuana here in Canada, so any studies would be helpful, as well hearing from any other person with this illness who has found relief from this wonderful medical plant.

Source: Comments and Observations
 
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