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What's UP Doc? Live- Cutaneous Porphyrias Bonus Questions

  • Mar 27, 2024
  • CEP, EPP/XLP, PCT, Recordings, What's UP Doc


UPA's own Kristen Wheeden and porphyria expert Dr. Bruce Wang tackle the questions we didn't get to in the February 24, 2024 livestream on Facebook Together!


Time Stamps

1:30- Current treatments for the porphyrias
4:11- Participating in research in the UK and worldwide
5:11- Which porphyrias cause anemia?
6:30- Light sensitivity and photoreceptors

8:30-EPP, Access to Scenesse through primary care
9:53- EPP &PCT, phlebotomies
12:19- EPP, itching and burning on the soles of the feet
13:32- EPP, bone marrow transplant and sun sensitivity
16:39- EPP, medication for children
17:07- PCT and acute porphyria symptoms
19:53- PCT,  drug allergies


Questions from the original livestream (view here)

7:35- PCT, alcohol consumption
10:00- EPP, Vitamin D
11:51- Replenishing heme without infusions
17:47- CEP, understanding the severity
22:35- PCT, blisters from indoor light
27:34- EPP, why might symptoms get worse
33:58- PCT, treating blisters
35:48- EPP, current clinical trials
44:37- PCT, can stress trigger or worsen symptoms
51:14- EPP, menopause
56:30- What are ALA, PGB and porphyrins?
59:05- EPP, treatments internationally
1:02:10-  Can you have porphyria and still have a negative genetic test?
1:06:18- Why patients should participate in research?



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Cutaneous Porphyrias