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Blood Cancers & Disorders | Last Active: 2 days ago | Replies (33)
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Hi @duaine29 If you haven’t been tested officially for porphyria, your primary care physician would be the first place to start. Porphyria generally is an inherited disorder where the blood is missing some components. So if you remember your mom having these attacks, you’re having then and now your daughter is starting, it would be important for all of you and any siblings or other children to have a genetic test run. From the articles I’ve posted below, once diagnosed there are medications which can be given to help offset the potential events, which sound really debilitating! I’m sorry you’ve had to go through this.
United Porphyrias Association has a good website for patients with porphyria. In the upper right hand side of their main page there’s a resource guide including how to find a specialist.
https://www.porphyria.org/porphyria
Another resource for you:
American Porphyria Foundation: https://porphyriafoundation.org/for-patients/about-porphyria/treatment-options/finding-a-doctor/
Have you had a referral to a hematologist?