I love seeing the increase in global awareness about Porphyria in recent months!!! While the info here was a bit scattered in the way it was presented, and a bit...error...misleading at times (I don't want to say wrong, but...😬), it's still desperately needed exposure, so kudos for that! The parts that are a bit...confused...are 100% understandable and forgivable, because much of the content online about Porphyria is also outdated, and/or inaccurate (even on very reputable medical sites!!!) *sigh* If you have any additional questions about Porphyria, feel free to ask! I have Hereditary Coproporphyria, or HCP, and while I am most knowledgeable about my own subtype, I know a fair bit about the types as well. 😉
Hi, I know this is an old post but just wanted to ask about your symptoms. I can't be out in the sun and I also have severe muscle and abdominal pain from time to time. Not sure exactly which type of porphyria I have but I was told that I have it. Any info will be appreciated.
I Have Cutaneous porphyria from PR Many times the y have told me that they are no treat meants and i just gotta endure and Its crazy to some one who is in constant pain most of the time
I have the x linked protoporthyria and in college and school I was constantly berated because I was wearing balaclavas and gloves and hats so I constantly was being bothered by teachers and college staff and also student bullies because of it they have no clue how painful it is
@Bowlingthunderstormman It sounds incredibly challenging to deal with X-linked protoporphyria (XLP) while facing misunderstanding and bullying from those around you. The lack of awareness about how painful and debilitating the condition can be makes it even harder. It's important to advocate for your needs and educate those around you whenever possible, so they can better understand and support you. Stay strong and prioritize your health, even if others don't fully understand.
@@MedicalCentric I will thanks so much this comment means a lot to me as we are very scarce and know one truly understands the strength we need to make it through life day to day while they can effectively walk outside or sit by a window for us that is not possible and I tried to explain that but no one cared but I am glad to see that there is a community of us who know exactly what we are all dealing with
Reading "The Invisible Rainbow" by Firstenberg highlights the impact of electrical and chemical pollution on health, particularly conditions like porphyria. ❤️
I have Hemochromatosis and Porpheria. Not sure what type but wondering what to expect if you have both. I'm experiencing chronic pain in my bones, nerves, muscles , etc.
If you have hemochromatosis and also suspect porphyria, then the only type it could be is PCT (porphyria cutanea tarda), which is the only environmentally acquired (vs inherited) form of Porphyria and is the 2nd most common, after AIP. Some find relief from PCT symptoms through regular sessions of blood removal (similar to those who donate a pint or two monthly at a local blood bank...except yours would most likely happen at your Dr's office). If you haven't already, get connected with the American Porphyria Foundation. They have tons of resources available for anyone with, or who suspects they may have porphyria.
What sort of environmental things trigger it? My doctor is supecting I have this and I also have hemochromatosis..I was exposed to black mold prior to my illness starting but it seems that birth control triggered my symptoms…
I also have Hemachromotosis and Porphyria (PCT). I was diagnosed in 2012, and believe me I feel your pain. It's such a painful rare disease. You're the 1st person I've met that has both Porphyria and HeMo as well
Yeah I feel pity- you would too if you were sick every day of your life snd it just passed you by filled with ignorant judgement- few understand and noone cares .
I love seeing the increase in global awareness about Porphyria in recent months!!!
While the info here was a bit scattered in the way it was presented, and a bit...error...misleading at times (I don't want to say wrong, but...😬), it's still desperately needed exposure, so kudos for that!
The parts that are a bit...confused...are 100% understandable and forgivable, because much of the content online about Porphyria is also outdated, and/or inaccurate (even on very reputable medical sites!!!) *sigh*
If you have any additional questions about Porphyria, feel free to ask! I have Hereditary Coproporphyria, or HCP, and while I am most knowledgeable about my own subtype, I know a fair bit about the types as well. 😉
Hi, I know this is an old post but just wanted to ask about your symptoms.
I can't be out in the sun and I also have severe muscle and abdominal pain from time to time. Not sure exactly which type of porphyria I have but I was told that I have it. Any info will be appreciated.
I Have Cutaneous porphyria from PR Many times the y have told me that they are no treat meants and i just gotta endure and Its crazy to some one who is in constant pain most of the time
Thank you for this video - very informative
Jeez.. I feel really bad for the victims ☹️😢
Thank You for excellent info
Our pleasure!
Thank you VM for your clear English. I don't know how is the prevelannce of porphyria in Egypt?.for my
32 years of practice I didn't
See any case?
Very interesting.
Glad you think so!
Amazing videos Thank you
Glad you like them!
I have the x linked protoporthyria and in college and school I was constantly berated because I was wearing balaclavas and gloves and hats so I constantly was being bothered by teachers and college staff and also student bullies because of it they have no clue how painful it is
@Bowlingthunderstormman It sounds incredibly challenging to deal with X-linked protoporphyria (XLP) while facing misunderstanding and bullying from those around you. The lack of awareness about how painful and debilitating the condition can be makes it even harder. It's important to advocate for your needs and educate those around you whenever possible, so they can better understand and support you. Stay strong and prioritize your health, even if others don't fully understand.
@@MedicalCentric I will thanks so much this comment means a lot to me as we are very scarce and know one truly understands the strength we need to make it through life day to day while they can effectively walk outside or sit by a window for us that is not possible and I tried to explain that but no one cared but I am glad to see that there is a community of us who know exactly what we are all dealing with
Read The Invisible Rainbow by Firstenberg. Porphyria is about electrical and chemical pollution.
Reading "The Invisible Rainbow" by Firstenberg highlights the impact of electrical and chemical pollution on health, particularly conditions like porphyria. ❤️
I have Hemochromatosis and Porpheria. Not sure what type but wondering what to expect if you have both. I'm experiencing chronic pain in my bones, nerves, muscles , etc.
If you have hemochromatosis and also suspect porphyria, then the only type it could be is PCT (porphyria cutanea tarda), which is the only environmentally acquired (vs inherited) form of Porphyria and is the 2nd most common, after AIP. Some find relief from PCT symptoms through regular sessions of blood removal (similar to those who donate a pint or two monthly at a local blood bank...except yours would most likely happen at your Dr's office).
If you haven't already, get connected with the American Porphyria Foundation. They have tons of resources available for anyone with, or who suspects they may have porphyria.
What sort of environmental things trigger it? My doctor is supecting I have this and I also have hemochromatosis..I was exposed to black mold prior to my illness starting but it seems that birth control triggered my symptoms…
I also have Hemachromotosis and Porphyria (PCT). I was diagnosed in 2012, and believe me I feel your pain. It's such a painful rare disease. You're the 1st person I've met that has both Porphyria and HeMo as well
Is psedoporphyria same as this?
👍 (but vomiting at 2:26)
Yeah I feel pity- you would too if you were sick every day of your life snd it just passed you by filled with ignorant judgement- few understand and noone cares .
So this what king George got in charlotte.
He depicted as having Porphyria, a genetic disorder affecting the nervous system and skin. ❤️