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Who do I see for porphyria?

Blood Cancers & Disorders | Last Active: Dec 2, 2022 | Replies (26)
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@brios

Thank you so much for the info. I was just diagnosed in July by my primary care provider. Originally went down the route of an autoimmune disease, like lupus, but that was negative and we finally found the answer with porphyria testing (which opened more questions). They have reached out to 6 hemotologists for a referral but as of yet we haven't had much luck. I'll look into the appt with the Mayo clinic, I wasn't aware that was an option! Thank you!

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Replies to "Thank you so much for the info. I was just diagnosed in July by my primary..."
Lori, Volunteer Mentor | @loribmt | Sep 27, 2023

Good morning, @brios. It’s just crazy that your doctor has reached out to 6 hematologist and you’re left foundering? There should at least be someone able to get you in for an evaluation!

Yes, by all means initiate an appointment with Mayo Clinic. Either you or your PCP can do this. Make sure you mention that you’re not able to receive local care for this as it appears out of the ability of local hematologist. (Not that it is, but you’re not getting any care from them and you need help)

Other options: If you have a large, teaching hospital such as a university hospital you may have better luck than a smaller, local clinic at this point.

Also, I’m not sure where you’re located, but Mayo Clinic partners with selected medical facilities across the US who meet their qualifications for patient care.
Here is link to the map of these clinics.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
I truly hope you can find some assistance soon. Have you requested being put on a cancelation list for any of these hematologists?

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