Meet Dr. Karl Anderson
The porphyria community is lucky to be supported by dedicated physicians, researchers and advocates who work tirelessly to improve care and develop new treatments for porphyria. The United Porphyrias Association is pleased to introduce you to some of them!
Everything you learn about the disease you learn from patients.
-Dr. Karl Anderson
Can you introduce yourself and tell us a bit about your connection to porphyria?
My name is Karl Anderson. I'm currently at the University of Texas Medical Branch in Galveston, TX where we mostly do clinical research on the porphyrias. We look at important clinical questions for all the porphyrias: study new treatments as they become available, try to understand some of the basic mechanisms of these conditions and try to encourage prompt and accurate diagnosis.
I trained in gastroenterology and liver diseases, so porphyrias came up from time to time early in my training. I became more interested in this field while working at Rockefeller University in New York, where a research group I became part of was studying porphyrias and related aspects of heme metabolism.
How have things changed for people with porphyria over the time you’ve been working in the field?
There have been advancements in the tools we have to diagnose porphyrias. We now know what enzymes are deficient in each type of porphyria and have a better understanding of what we need to measure in terms of porphyrins and PBG to make a diagnosis. Genetic testing is also available now.
Unfortunately, even with the improved methods for diagnosis, the time to get a diagnosis hasn’t really improved.
We have better treatments now. Hemin has been available for more than thirty years and more recently we’ve had givosiran for the acute porphyrias, both of which have been huge advancements. We also understand PCT better and have several options for treating it, phlebotomies or low dose hydroxychloroquine for example. And if a person has PCT and hepatitis C, we now know that treating hepatitis C will also treat their PCT. Afamelanotide is now available to increase sunlight tolerance in the protoporphyrias, and additional treatments are being developed.
What do you see as the biggest challenges or unknowns in porphyria?
I think diagnosis is still a big problem. There isn’t much consistency between different labs and more harmonization between labs would help physicians and patients know how to diagnose these conditions. Testing for porphyrias needs to become more frequent and routine if we want to diagnose these diseases earlier and more accurately.
Do you have any advice for patients or caregivers who want to advocate for themselves or get involved in research?
There are a lot of studies in porphyria and new treatments being developed right now, so there are a lot of opportunities to get involved in research. Staying in touch with the UPA is the best way to get news about what studies are being done, what treatments are being and how to get involved.
If your care is being managed by your local physicians, it can also be beneficial to get advice from someone with more porphyria expertise. UPA can help your care team connect with a porphyria expert to consult.
What have you learned from working with patients over the years?
Everything you learn about the disease you learn from patients. It’s important to understand how the disease really affects people, how the treatments benefit people, and for that you really need to listen to your patients.
Meet more of the experts and advocates changing the world for porphyria
Meet more of the porphyria experts and advocates changing the world for porphyria
