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?
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