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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?
Dr. Bruce Wang answers the questions about acute hepatic porphyrias that we didn't get to in the Facebook Live Q&A on February 24, 2024.
"Collaboration between patients, caregivers, advocates, expert physicians, industry partners and regulators is necessary to realize advancements in porphyria. All of us doing our important roles can lead to better diagnostics, new therapies and better quality of life for our patient community."
In a special livestream for Global Porphyria Day 2023. UPA's own Kristen Wheeden and Porphyria Expert Dr. Bruce Wang answered your questions! Recording now available.
Check out this recording of UPA's Kristen Wheeden and Porphyria Expert Dr. Bruce Wang as they answered your porphyria questions live.
