Even if You Don’t Use Cannabis, You Should Participate in This Survey

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by Claire Richmond |

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When it comes to treating porphyria symptoms, there are more options than prescription medication alone.

Just about every patient I know who’s managed an active disease state for any length of time has a recipe of wellness-based and self-help practices to cope with pain and stress. Mine includes daily meditation, restorative yoga, and reiki. I have a shelf full of vitamins and a lockbox containing a vape or two.

In recent years, an increasing number of states have recognized the medical (and recreational) benefits of marijuana. Following suit, I’ve noticed the collective attitude of the porphyria community shifting from one of warning to one of active curiosity.

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A research study is collecting anonymous erythropoietic protoporphyria (EPP) and acute intermittent porphyria (AIP) patient surveys on the use of complementary and alternative medicines (CAMs), including cannabis. There’s never before been a mechanism that’s systematically collected porphyria patient data about alternative medicines and therapies.

Hetanshi Naik, PhD, CGC, is the researcher conducting the CAM and Cannabis Use study sponsored by The Porphyrias Consortium. Naik is an assistant professor in the departments of genetics and genomic sciences and population health science and policy at Icahn School of Medicine at Mount Sinai in New York, where she also serves as the director of the Genetics Clinical Trials Office and the director of clinical research for the master’s program in genetic counseling.

Her interest was piqued as people with EPP kept telling her that they use marijuana and it helps their symptoms.

“Sometimes people were hesitant to admit it, so I tried to ease their mind by asking more questions,” she explained to me on a phone call. “I want to know if marijuana use is underreported or not, and if so, is that because people don’t want to be judged or because it doesn’t work?”

Naik is hoping to collect 200 completed surveys from each porphyria subtype and will keep the research study open as long as she can. Since February, she’s received responses from over 100 people living with EPP. She wants to hear both from people who do and don’t use cannabis. But for those who do, she’s curious to discover if it’s used to ease pain or other symptoms.

After speaking with Naik, I navigated to the online AIP survey. I didn’t know what to expect, but I was pleasantly surprised when the questions were about patients’ experiences with practitioners like chiropractors, acupuncturists, naturopaths, and spiritual healers. (I’ve tried them all, by the way.) It also asked about the success of herbal remedies, vitamins, massage, and alternative therapies, with blank fields to fill in specifics. All said and done, it took me 20 minutes to complete because I tried to be thorough.

I’ve created a “flare kit” of self-help methods to manage my porphyria, but have not personally had success with marijuana easing my chronic or acute porphyria pain. Nor have I found a formulation to help with insomnia. Actually, I’ve had some unpleasant experiences occur, including migraines.

Recently, I’ve found that a very low dose (0.25 mg) of THC mixed with CBD helps ease generalized anxiety, more as a general mental health remedy. I’ve not discovered any treatment that addresses the anxiety-producing cognitive shifts I get surrounding an acute attack.

Speaking to others with AIP, I heard similar stories of intoxication avoidance and opting for a lower dose of THC. However, a friend of mine in California swears by edibles for her insomnia, and has a whole bedtime ritual around when she takes her gummy.

I spoke to a couple people who are too nervous to try it, fearing it could make their attacks worse, and I totally get it. The acute porphyrias can affect the way patients respond to drugs, meaning the wrong medication could provoke an attack. We live by the Porphyria Safe Drug List and are wary of any pill we swallow.

Even if cannabis isn’t for you, I hope you’ll participate in Naik’s research if you qualify. It could be the basis for our understanding of treatments beyond those received in standard medical clinics. If you haven’t already, please take 15-20 minutes and complete the patient survey (see links above)!


Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

Comments

Angie avatar

Angie

Desiree Lyon used the description “one thousand flaming swords” and she could not be more correct.

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Claire Richmond avatar

Claire Richmond

Angie- I really couldn't think of a better title for my column. It pays homage to a founder of porphyria advocacy and begins to describe the sensations of an acute attack. But let's be honest, there's really no word in the English language that quite conveys the pain. Thanks for reading!

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