Introduction to Porphyria | Porphyria Cutanea Tarda vs. Acute Intermittent Porphyria

[@gracedelacruz8776]

I just want to thank you because your video on Medical Terminology really helped me out to review

[@katyeastment640]

Ty. Diagnosed AIP 22yrs. Now 60 yrs. Lessening of symptoms in 2003 after total hysterectomy.

[@MrBeigns]

That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

[@sophs...]

11years ago a rheumatologist told me i have secondary porphyria but couldn't figure out what autoimmune condition is causing it. Every symptom matches up to this condition. For me it flared during pregnancy. Ive had my gallbladder removed thinking that was the pain. Ive had so many scans and tests that come back inconclusive. I think hormones and stress are triggers for me. Does a porphyria flare get better on its own? Because my symptoms go away without treatment. Its hard to get anyone to believe me that I feel unwell.

[@katyeastment7532]

Thank you. At last I understand my inherited condition x

[@MrBeigns]

Alright

[@katiejohnson8534]

That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

[@Vampiric_Goblin]

I have it too

[@josephswisher8315]

You rock! Great overview that I can listen to on the go.

[@donotweep]

Awesome. I thank you for taking the time to do such educational videos. As for comments regarding excessive noises...I believe the clicking for the presentation was mistaken for something else altogether...I hear clicking for the presentation and that is all beside your voice and I have pretty sensitive hearing.

[@madisonnelson942]

Does someone always get a reaction in the sunlight with erythropoietic protoporphyria?

[@barjensen3607]

This helped me out quite a bit I now know what I have I have the first one

[@Iamnotfromhere]

I have porphyria inherited kind and the Hercules Gene with these Gene doses Hercules Gene affect the porphyria?

[@Aviggers123]

I think I have this and was diagnosed with alcohol cirrhosis but I’m trying to get tested and none is listening

[@545NJ90]

1:55-1:58, do you mean HMBS is what causes Acute intermittent porphyria and not URO I synthase?

[@dencollie]

What if I’m a carrier (23 and me)? Only 1 gene? Is it still important to avoid certain drugs?

[@andrewcameron6611]

How do i test for Porphyria ?

[@rianasteyn5218]

Yes very sensitive for the sun, I have bad experience of the sun. And I have this tummy, terrible.

[@Dr.NaeemAkhtar]

Uroporphyrinogen 1 is also called hydroxymethylbilane

[@globuspallidus2457]

Very helpful, you rock

[@rianasteyn5218]

My father and all his brothers and sister has porphyria. Well and all of us, we are 8 children have porphyria. 2 brothers and 6 sisters.

[@victormanuelmbisbee9743]

What about the glucose in the AIP ?

[@rittenbrake1613]

Good bro ! Keep going !

[@jaydoubleu3419]

can zinc cream protect them from the sun

[@Vampiric_Goblin]

Yes but once we reach our limit of sunlight then there's nothing anything can do to help except some of us can't have any so it also depends

[@the_true_medicine]

Nice 👍🏼

[@norma9237]

Thank you so much

[@rianasteyn5218]

And we must be very carefully what medicine to use. Yes have bad experience with wrong medicine too.

[@MrBeigns]

Good

[@Vampiric_Goblin]

Where my Porphyria fam at? I have HCP

[@briancollins9258]

I am here

[@MrBeigns]

That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

[@LT-hg5fp]

I have PCT

[@briancollins9258]

Me too it sucks

[@MrBeigns]

That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

[@adrianpop4427]

Acute intermittent porphyria is caused by a deficiency in PBGD enzyme like you correctly state in one of your recent videos (kzbin.info/www/bejne/qXiuh5iJrdGIgtk). Also you skip over one step in the heme synthesis pathway - hydroxymethylbilane - in this video as well as in your Heme Synthesis Pathway video. Corrections in both videos are needed in my opinion.

[@teslaandhumanity7383]

I got this 😢

[@DamianPuresoul]

Vampires disease

[@PapahenryGarrard]

Good night love mom

[@GiGi-um3qn]

Porphyria EPP ...😑

[@denaturner8871]

First, let me just say that Porphyria sucks so damn much. Second, this seemed scattered and under prepped for. It felt like as soon as you had the basic building blocks of these disorders listed and were ready to go into detailed analysis and explanation of these 2 comparatively, you just wrapped it up and were done, like "I hope you found this helpful". Well, no, no I did not, thanks for asking though. Third, I am not sure if you were chewing on something (ie. Lollipop, pencap, pencil etc.) but if you were, please don't. If you weren't then I would suggest looking into a moisturising mouth/throat spray (many radio hosts and/or singers use these) to use for your recording, as well as possibly backing away from your mic a bit. There is a very audible and distracting "smacking" type of mouth noise throughout the video. I would imagine that most people either wouldn't notice or could look past it, but for persons with auditory sensory issues (like myself) it is rough.

[@jjmedicine]

Hi Dena. Thanks for your comment. I'm sorry if you or someone you know is afflicted with a porphyria condition. And, I'm also sorry you didn't find this lesson helpful or up to your standards. First, this is an "Introduction to Porphyria" lesson - even after a 12 minute lesson, like you said I "just wrapped it up" - I would suggest you please check out others' youtube lessons on these topics for help (all are FREE, which is nice, right?). Not sure what you are referring to by "smacking" - no chewing on anything during my lessons! Maybe I have some issue with dry mouth...haha! I'm not sure, but what I can tell you is that recording videos can take a lot of talking/practice/repetition (so can't rule out the dry mouth part!!). Again, like I said these lessons are FREE, which means you don't have to click on the video OR you don't have to continue to watch it if you don't like it - that's all I can say!

[@denaturner8871]

JJ Medicine thank you for your reply. To answer a few points, I do have porphyria, PCT and oddly enough with certain medications I can experience AIP episodes, according to the Dr that diagnosed me it isn't "normaly" seen to have or experience both but with further testing and avoidance measures we found that AIP doesn't rear itself without a chemical trigger, for me that is, not everyone as I'm sure you're aware. I apologize if my previous comment came across crass, I didn't mean for that. I am a nerd at heart and learning about anything is fun for me, especially when it may impact my life in some way. It wasn't at all that it wasn't up to my standards, it was more like "ok, classifications reviewed, lets dive deeper and go, wait... come back detailed information!" lol I am far more light hearted than I think may have come through originally. 😁 As far as sounds with the recording go, I tried to explain that I know I am extremely sensitive to oral sounds and noises, as I have a pretty high reaction to auditory stimuli - I know I'm weird. I can actually tell if a person is wearing dentures and/or what teeth may be missing by phone conversation. My sensitivity to it is excessive and can induce panic attacks if triggered bad enough (this is one of the reasons I had to resign from telephone customer service/call center work). If I happen to find a spot that I think I may be able to provide helpful feedback, I do so, and that is all that I intended with my comment. This is why I stated it the way I did and suggested the spray, truly no harm was meant. LMAO I literally just got finished with an argument with my husband about my delivery of conversation and speaking in general, as I guess something I said to him seemed combative, so apparently I'm on a roll tonight! lol my apologies!

[@maabbuk7230]

Thank you so much