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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
8:27- Toxic mold exposure and porphyria
9:43- Acute porphyria and kidney issues
11:31- Resource recommendations for patients and care providers
12:26- Managing porphyria without drugs
15:06- Taste and smell hallucinations
16:53- Passing out during an attack
18:25- Shaking uncontrollably during an attack
19:23- Connection with mental health conditions
21:06- Getting emergency department to recognize it's an emergency
23:28- Recommendations for surgery
27:23- Why some drugs cause porphyria attacks
29:10- Participate in drug safety research!
31:16- Perimenopause and acute porphyria
33:03- Working fulltime with porphyria
38:16- When to test for ALA/PBG
39:53- Prevalence of HCP in Scotland
40:46- Gastritis and porphyria
Questions from the original livestream (view here)
11:51- Replenishing heme without infusions
15:07- Pain and weakness after attacks
22:35- Blisters from indoor light
25:34- Why do some people get blisters and others don’t (HCP & VP)
31:18- Kidney health
33:58- Treating blisters (HCP & VP)
41:53- Twitching and spasms in acute attacks
44:37- Can stress trigger or worsen symptoms
46:01- Information in emergency rooms
50:03- Connection to fibromyalgia
53:52- Memory loss and confusion
56:30- What are ALA, PGB and porphyrins?
1:02:10- an 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.
