@@kristendowney6251 Thank you for your comment Kristen! It definitely is a difficult circumstance with loved ones trying to support this. I am very black and white about it. I would rather go about my day as if everything is fine (as much as I can) and not have people dwell on it or feel bad for me. On the other hand, if it is a conversation that happens from time to time, there is comfort in your support system doing some level of research to better understand the circumstance. The idea of someone going out of their way to do some research about something that affects a loved one just strengthens the support tenfold. From experience, having close ones who don’t try and understand, deny it’s happening or just disregard the feeling, is a massive sting, but as someone with this disorder, I can’t get myself to confront that.
During COVID they cut off my disability and I was forced to get a job at a grocery store where I had to walk there every day because I didn't have a car. I lost the ability to walk and control my bowls. I lost my job but fortunately I got lucky. There was a food bank down the street that delivered food to my house and I got my disability check back. But I was bed ridden for 3 to 4 months before I gained the ability to walk again. I live with a lot of shame and fear because of stigmas and stereotypes in my community... 😢
Thank you so much. My latest doctor has finally tied my entire medical history together and believes that this is an appropriate diagnosis. He was puzzled by my gait issues. But you mentioned that this is common in later years. I have signed up for the Facebook groups and received the informational packet. again, thank you for your vulnerability.
Thank you for sharing! I’m glad to hear the dots have been connected for you. I hope you find value and comfort in the Facebook groups, they are a wonderful resource.
thank you 🙏🏽 I just experienced this storm with my 32 year old daughter. 4 hospitals later they diagnosed her with Porphyria 🥹It was painful to watch. Here we have this strong young woman get hit with this out of nowhere. the other hospitals sent her home saying she had the Flu!!!
Thank you for sharing! It’s a very hard diagnosis to accept, but the plus side is, you now know what it is, instead of spending years and years searching for that answer. She should join our Facebook groups from the American Porphyria Foundation, it’s a wonderful community of people who are asking questions, chatting with people who can relate and it’s just all in all a great group of people.
Andrew, Thank you!! for bringing awareness and for sharing your struggle with acute hepatic porphyria ! I appreciate your transparency and optimism in the face of this extremely challenging, painful, terrifying, and at times, life consuming illness. I have VP and was diagnosed in 2018. It came on with a vengeance as yours did- different symptoms but same severity. It stole my life- I was just barely surviving for years. I’m grateful that I was finally able to have life-saving hematin treatments and am now on Givlaari which has nearly eradicated my attacks. I was having attacks every 3-5 weeks… my quality of life was so poor that I was merely a skeletal wisp of my former self. I developed severe agoraphobia and put myself into inpatient treatment - but while there I was having constant attacks that were not being treated, so I really had to choose whether I wanted to live and go on, or simply give up. Acute porphyria can make people feel incredibly alone. This isn’t a disease that one can manage on their own, once it reaches a certain level. It is important that you brought up the psychiatric aspect of porphyria, as many aren’t aware that the attacks themselves can cause serious neuropsychiatric problems: paranoia, hallucinations, extreme panic, suicidal ideation. On top of that, in between attacks we are caught in a strange mental place where we realize we are not ever really physically well, which can lead to secondary depression, fear, etc. We all experience this disease differently, and you’re right- having a support system is key. I heard you say “it is really hard to describe” or something similar - which is something many porph patients say. The depths of suffering we experience are beyond words, truly! It is important to keep talking about it, bringing it to the public as you have, and continuing the conversation. I’m so sorry for what you’ve gone through. I admire the determination you have to maintain a quality of life despite having porphyria. You remind us all to do self care and to try to stay open to things like therapy. A combination of being fortunate enough to have access to cutting edge medicinal approaches, willingness to do therapy and - well, sheer willpower to stay alive for my daughters is why I am here today. Andrew, my heart is with you and all of our fellow warriors as we each navigate this illness with superhuman amounts of courage and willpower. ❤️❤️ Porphyria warriors can see the beauty in every simple, pain-free moment and will never take life for granted. That is our gift in all this.
Thank you for sharing that Eryn and taking the time to listen to this story of mine. For the longest time I neglected to accept the fact that porphyria affected me outside the hospital. I thought maybe I was just having a “quarter life” crisis of something that everyone has in their lifetime (is this what I want to do with my life?, etc.) but as I have taken the time to talk this out more which is something I neglected to do for several years, I put this sturdy wall up and threw everything porphyria behind it until I had an attack again where I would just explode every year and sink internally as I laid there in the hospital bed. It is hard to describe and I feel the connections to loved ones have severed a bit because they couldn’t begin to understand what goes through my mind on a daily basis, and at the same time, as I mentioned, I struggle to let my support system know how I’d like them to react. I truly hope you continue to stay healthy and in the best mindset as possible as you navigate through this life porphyria has laid out for you. I’m happy to hear that the medications are working in your favor as I have heard they don’t for some. You’re a trooper for keeping your head held high with the frequency of your attacks, and I wish nothing but the best for you and your family for generations and generations to come ❤️
Thank you so much for sharing your story. The way you describe the patient experience is so accurate that it moved me to tears. If only every A&E department would share it with their staff.
thank you for this video. i feel very very alone even when seeking medical care. like i’m telling them what’s happening and i can’t really ever feel supported because i’m always telling them. i’m currently having to stop taking meds that i have been on for years, but it’s sending me into spirals. I feel so hopeless.
Thank you for taking the time to watch! Im glad you resonated. I’m sorry to hear that you feel alone during all this. Chat with some people in the Facebook groups, it’s always comforting knowing who can relate.
Thank you so much for sharing this video. My five year old daughter just got lab results back to find that she has a cute porphyria. She has been struggling with insomnia, night hallucinations, bowel/constipation, anxiety, and PICA. We have been praying and searching for answers. Finding this answer in her blood work is an answer to our prayers to finally have a path forward, even though it is a bit of a scary diagnosis. I am anxious to learn how to help our sweet little girl manage her symptoms as she gets older and for us to be as educated as possible now so we are prepared to help her live as happy and healthy a life as possible. Your experiences are heartbreaking to hear, but are so good for me as a mother to understand how I can best support my baby girl as she goes through this in her life. Thank you!
At home things you can do during an attack: take pure tapioca dextrose 1 tsp sublingually (at the hospital they can give dextrose IV, but it is very hard on the veins). Take activated charcoal which will bind to some of the porphyrins and help you eliminate them without damaging the kidneys and bowels.
Thank you for taking the time to watch, and I appreciate you sharing what you and your family are going through as well. I’m so so so happy to hear that you have been able to find some answers for your daughter.
Nobody believed me for 10 years, I thought I was gonna die, I was so weak, dehydrated and sad every time, once I had two attacks very close together and lost so much weight, but the problem was/ is, when I have an attack, I can’t even find my phone let alone call somebody, I can’t only exist in an embryo position in bed, until it’s over and the only doctor who believed me said I had to call and come in during an attack but I just can’t, it’s impossible… it totally changed my life, I was totally healthy and fine until 36 years old.
Thank you for sharing your story....it sounds exactly like my daughter's..but hasnt been as lucky in getting a definite diagnosis. Now know we have to try harder to make medical team understand that this is real
Thanks for watching Sharon! I hope getting a proper diagnosis happens sooner rather than later. It took me a while to stop just accepting the care I was getting and switching to the perspective of demanding what I knew was best for me.
This sounds just like what my daughter is going through~ what test can be done to confirm this ? I showed the cover of your video to the nurses caring for her and they had never heard of it . Thank you so much for sharing! Looking forward to Isaiah 33:24 🙏🙏
@@ottochannel6556 Hey! Thanks for watching. I went through several blood and urine tests, but ultimately it came down to a DNA test to confirm it. If you reach out to the American porphyria foundation they will supply you with a free dna sample for reference and dna tests you can get. porphyriafoundation.org/for-patients/about-porphyria/testing-for-porphyria/dna-testing-for-porphyria/
Its one thing reading about this in medical books n another listening to someone's experience. Could totally feel you on the chronic disease anxiety part. As a Stage 4 Endometriosis patient and a doctor applying for OBGYN, having experienced both sides of the table; so happy that you've decided to share your experience. Hit home on the "normal" n "non-attack" days distinction. The first time I was diagnosed, I felt helpless as a medstudent transitioning to being a doctor. The complications Endo brings with it made me negative But then it came at a juncture where I am to pick my medical speciality. Kinda perfect timing. Turned my life upside down for sure. Every word synced so much🙏🙏🙏 Especially the "I'll probably die from it". Voiced out my thoughts.
Thank you for sharing your story so eloquently. I've lived with many of the same symptoms since childhood. I am now 70 years old and still don't have a definitive diagnosis as lab test were taken twice but weeks after I was sick. One doctor (neurologist) suggested AIP and most other doctors I met since then roll their eyes and say: "Let's just not go down that rabbit hole, chasing the Porphyria theory." I've spent my entire life avoiding triggers, which has been exhausting. I pray every day I never need to go to the hospital for the same reason you describe so well: "I know more than they do." My story is simply too long to put in a few words, but with new information and knowledge and connecting with folks like you, I don't feel so lonely and isolated any more. I am stronger because of it and I know you are too. I know you will make peace with this in due time.
Thank you so much for your thoughtful comment Esther. It will forever rub me the wrong way how doctors can just push something off without further testing. I feel like saying “Me getting additional tests for peace of mind will put money in your pocket I’m sure, so let’s just do it anyway.” I’m so sorry to hear that after all these years you haven’t received a proper diagnosis. As I mentioned in the video, we lean on medical staff to help us and I’m fortunate to realize that sometimes you need to make a stand and challenge what they think is best for you. I’m happy to hear this video resonated. I wish you nothing but the best and great health for years and years to come 🙏
@@andrew.mcmanamon So grateful for the Porphyria Foundation 💜and their offer to do DNA testing. I have the forms now and will persue that with my doctor at my next visit in May. Stay strong, take good care of you, and continue to do your good work inspiring others to persevere.💜
Thanks so much for sharing your story and supporting the APF. I have HCP and went nearly a decade undiagnosed and bed ridden. I used to have my story up on here but also have a podcast This Girl Is Sick! I share my journey.
Thank you so much for watching Emily! I'm sorry to hear it took so long to get diagnosed, but your stories and struggles are helping so many people I'm sure of it.
Thank you for your outstanding post, my well-spoken friend! Your experience is similar to mine, although I'm now 73 and have been dealing with porphyria for 16 years. Attacks are no fun, although I do find some dark humor in explaining porphyria to doctors, well intentioned and otherwise. At one ER visit, the attending, after discussing my symptoms, excused herself and returned a few minutes later asking more specific questions. "Did you just Google porphyria," I asked. She blushed quite deeply. As I have aged, I do find the fatigue to be more of a challenge, and strive to work through it. A few things I've learned: Those cysts in my liver are like feral cats and the homeless; you can get rid of them but they come right back. Changes to my stomach walls are from porphyria, not cancer. (That was a scare!) Thickening of my bladder lining is due to porphyria, not cancer. (Give me a break on assuming everything is cancer!) And no, I don't present at the ER for the Dilaudid, especially given that my last visit was six months ago! Be well on your journey and thanks again for an amazing post.
Thank you so much for watching Terry and sharing some insight on the 16 year relationship you and Porphyria have had. I have noticed the conclusions these doctors jump to and how they refuse to label this “issue” as porphyria despite the diagnosis and the uncertainty this disease causes to your whole entire body. I truly hope we can create so much awareness that we are no longer questioned. I heard the average time it takes to get diagnosed with porphyria is 15 years, and I know a lot of that has to do with the denial of the medical staff.
I have AIP with photophobia and UV sensitivity. I self treat. I use zinc sulfate with 15% sulfate. The APF suppressed this information of a simple inexpensive way to treat yourself for several years due to their connection to panahematin. Hope is out there.
Thank you for sharing your life story with us your very interesting as you speak ! Your not negative just learning daily it’s good your talking to help others because Drs don’t listen no one know your body but you ! Your a cool keep moving forward know how important you are hugs😊💪❤️🙏
A Doctor Who practiced medicine in Europe for 20 years where porphyria is common suggested that instead of Penhamatin drink a cup of pancake syrup, or eat a lot of ice cream. That has worked for me.
@@andrew.mcmanamon he said that basically is thick glucose. I have used that when I am in attack and my entire body hurts. I soak in a hot Epsom salt bath and do pancake syrup and ice cream. I’ve had it all my life so learned over time some things that worked for me. It was correctly diagnosed in 2012 after being told it was celiac disease, lupus, and other things that did not pan out because it is not an anti-immune disease. I am told my heme turns acidy and the glucose neutralizes the acid. I get sores over my entire body, too.
I am also South African. My problem is I can tolerate very very few medicines and in extremely low dosis. Porphyria was mentioned. Is it a possibility?
Hey Liz! Thanks for watching. Definitely use the American Porphyria Foundation as a resource, the website is jammed pack full of useful information. There’s also several Facebook groups to join to just chat with a lot of people dealing with this everyday. porphyriafoundation.org
Thank you for sharing your experience with this disease. We all need to help each other and give tips on what works for one. We need to check for liver cancer as we are 80% more likely do develop it. Is there a way to contact you?
I am trying to get a diagnosis but running out of time. I am at the abyss and don't know how much more I can stand. I wanted to ask if you also have headaches? I have symptoms all the time. This started 5 years ago. I have severe, constant headaches, constant abdominal pain, have to eat constantly to feel somewhat better, anxiety, depression, extreme muscle pain in my face, neck, back. Pins and needles in my arms, hands. I have had hundreds of tests and procedures, but no one can tell me what this is. I appreciate any information about your story and recommendations.
I have ALAD Porphyria; diagnosed last year at 30 years old despite having symptoms since birth and almost monthly attacks. Mayo clinic finally diagnosed me last year but didn't know what to do other than send me to researchers. I need to find a way to get hematin infusions but no one locally knows anything about Porphyria. Do you have any advice?
How long do attacks last and what are the triggers? Today makes 7 weeks straight that I've been sick and my doctor thinks I might have porphyria. I've never heard of it before yesterday! I do have a lot of the symptoms, but not all of them. I will hopefully be tested in the next week.
I have been diagnosed with subcutaneous porphyria. It worsened over the years. It’s impossible to make my family understand the severity of it. No them have it so they think I’m faking something. It’s hard to find any doctors who really know what you can or can’t do if you have this disease
For those of you who have Porphyria or are supporting a loved one who does, how has the experience been for you?
horrible. a nightmare. and thats just from the outside looking in. My heart breaks for all that suffer from it. Its hard enough just to watch.
@@kristendowney6251 Thank you for your comment Kristen! It definitely is a difficult circumstance with loved ones trying to support this. I am very black and white about it. I would rather go about my day as if everything is fine (as much as I can) and not have people dwell on it or feel bad for me. On the other hand, if it is a conversation that happens from time to time, there is comfort in your support system doing some level of research to better understand the circumstance. The idea of someone going out of their way to do some research about something that affects a loved one just strengthens the support tenfold. From experience, having close ones who don’t try and understand, deny it’s happening or just disregard the feeling, is a massive sting, but as someone with this disorder, I can’t get myself to confront that.
thanks for sharing
@@randallbogus1205 Thank you for taking the time to watch Randall!
@@andrew.mcmanamon Yeah this best describes what I have experienced
i was diagnosed in 2019, after that I have changed my life.. thank you for sharing
Your initial symptoms are exactly what I experienced. You have given words to my thoughts and insecurities 💫
Thank you for watching! I’m glad the video resonated 🙌
During COVID they cut off my disability and I was forced to get a job at a grocery store where I had to walk there every day because I didn't have a car. I lost the ability to walk and control my bowls. I lost my job but fortunately I got lucky. There was a food bank down the street that delivered food to my house and I got my disability check back. But I was bed ridden for 3 to 4 months before I gained the ability to walk again. I live with a lot of shame and fear because of stigmas and stereotypes in my community... 😢
Thank you so much. My latest doctor has finally tied my entire medical history together and believes that this is an appropriate diagnosis. He was puzzled by my gait issues. But you mentioned that this is common in later years. I have signed up for the Facebook groups and received the informational packet. again, thank you for your vulnerability.
Thank you for sharing! I’m glad to hear the dots have been connected for you. I hope you find value and comfort in the Facebook groups, they are a wonderful resource.
thank you 🙏🏽 I just experienced this storm with my 32 year old daughter. 4 hospitals later they diagnosed her with Porphyria 🥹It was painful to watch. Here we have this strong young woman get hit with this out of nowhere. the other hospitals sent her home saying she had the Flu!!!
Thank you for sharing! It’s a very hard diagnosis to accept, but the plus side is, you now know what it is, instead of spending years and years searching for that answer. She should join our Facebook groups from the American Porphyria Foundation, it’s a wonderful community of people who are asking questions, chatting with people who can relate and it’s just all in all a great group of people.
Andrew,
Thank you!! for bringing awareness and for sharing your struggle with acute hepatic porphyria ! I appreciate your transparency and optimism in the face of this extremely challenging, painful, terrifying, and at times, life consuming illness. I have VP and was diagnosed in 2018. It came on with a vengeance as yours did- different symptoms but same severity. It stole my life- I was just barely surviving for years. I’m grateful that I was finally able to have life-saving hematin treatments and am now on Givlaari which has nearly eradicated my attacks. I was having attacks every 3-5 weeks… my quality of life was so poor that I was merely a skeletal wisp of my former self. I developed severe agoraphobia and put myself into inpatient treatment - but while there I was having constant attacks that were not being treated, so I really had to choose whether I wanted to live and go on, or simply give up.
Acute porphyria can make people feel incredibly alone. This isn’t a disease that one can manage on their own, once it reaches a certain level. It is important that you brought up the psychiatric aspect of porphyria, as many aren’t aware that the attacks themselves can cause serious neuropsychiatric problems: paranoia, hallucinations, extreme panic, suicidal ideation. On top of that, in between attacks we are caught in a strange mental place where we realize we are not ever really physically well, which can lead to secondary depression, fear, etc.
We all experience this disease differently, and you’re right- having a support system is key. I heard you say “it is really hard to describe” or something similar - which is something many porph patients say. The depths of suffering we experience are beyond words, truly! It is important to keep talking about it, bringing it to the public as you have, and continuing the conversation.
I’m so sorry for what you’ve gone through. I admire the determination you have to maintain a quality of life despite having porphyria. You remind us all to do self care and to try to stay open to things like therapy. A combination of being fortunate enough to have access to cutting edge medicinal approaches, willingness to do therapy and - well, sheer willpower to stay alive for my daughters is why I am here today.
Andrew, my heart is with you and all of our fellow warriors as we each navigate this illness with superhuman amounts of courage and willpower. ❤️❤️ Porphyria warriors can see the beauty in every simple, pain-free moment and will never take life for granted. That is our gift in all this.
Thank you for sharing that Eryn and taking the time to listen to this story of mine. For the longest time I neglected to accept the fact that porphyria affected me outside the hospital. I thought maybe I was just having a “quarter life” crisis of something that everyone has in their lifetime (is this what I want to do with my life?, etc.) but as I have taken the time to talk this out more which is something I neglected to do for several years, I put this sturdy wall up and threw everything porphyria behind it until I had an attack again where I would just explode every year and sink internally as I laid there in the hospital bed.
It is hard to describe and I feel the connections to loved ones have severed a bit because they couldn’t begin to understand what goes through my mind on a daily basis, and at the same time, as I mentioned, I struggle to let my support system know how I’d like them to react.
I truly hope you continue to stay healthy and in the best mindset as possible as you navigate through this life porphyria has laid out for you. I’m happy to hear that the medications are working in your favor as I have heard they don’t for some. You’re a trooper for keeping your head held high with the frequency of your attacks, and I wish nothing but the best for you and your family for generations and generations to come ❤️
This is the best and most informative break down I have seen to date. Thank you for taking time to make this video!
Of course!! Thank you for taking the time to watch it 🙏
Thank you so much for sharing your story. The way you describe the patient experience is so accurate that it moved me to tears. If only every A&E department would share it with their staff.
Thank you so much for taking the time to watch. I’m glad you were able to resonate with it. I know it’s not the most entertaining thing to watch!
thank you for this video. i feel very very alone even when seeking medical care. like i’m telling them what’s happening and i can’t really ever feel supported because i’m always telling them. i’m currently having to stop taking meds that i have been on for years, but it’s sending me into spirals. I feel so hopeless.
Thank you for taking the time to watch! Im glad you resonated. I’m sorry to hear that you feel alone during all this. Chat with some people in the Facebook groups, it’s always comforting knowing who can relate.
Thank you so much for sharing this video. My five year old daughter just got lab results back to find that she has a cute porphyria. She has been struggling with insomnia, night hallucinations, bowel/constipation, anxiety, and PICA. We have been praying and searching for answers. Finding this answer in her blood work is an answer to our prayers to finally have a path forward, even though it is a bit of a scary diagnosis. I am anxious to learn how to help our sweet little girl manage her symptoms as she gets older and for us to be as educated as possible now so we are prepared to help her live as happy and healthy a life as possible. Your experiences are heartbreaking to hear, but are so good for me as a mother to understand how I can best support my baby girl as she goes through this in her life. Thank you!
At home things you can do during an attack: take pure tapioca dextrose 1 tsp sublingually (at the hospital they can give dextrose IV, but it is very hard on the veins). Take activated charcoal which will bind to some of the porphyrins and help you eliminate them without damaging the kidneys and bowels.
Thank you for taking the time to watch, and I appreciate you sharing what you and your family are going through as well. I’m so so so happy to hear that you have been able to find some answers for your daughter.
@@rachel39321please share more tips. How much activated charcoal do you take?
Nobody believed me for 10 years, I thought I was gonna die, I was so weak, dehydrated and sad every time, once I had two attacks very close together and lost so much weight, but the problem was/ is, when I have an attack, I can’t even find my phone let alone call somebody, I can’t only exist in an embryo position in bed, until it’s over and the only doctor who believed me said I had to call and come in during an attack but I just can’t, it’s impossible… it totally changed my life, I was totally healthy and fine until 36 years old.
Thank you for sharing your story....it sounds exactly like my daughter's..but hasnt been as lucky in getting a definite diagnosis. Now know we have to try harder to make medical team understand that this is real
Thanks for watching Sharon! I hope getting a proper diagnosis happens sooner rather than later. It took me a while to stop just accepting the care I was getting and switching to the perspective of demanding what I knew was best for me.
This sounds just like what my daughter is going through~ what test can be done to confirm this ? I showed the cover of your video to the nurses caring for her and they had never heard of it . Thank you so much for sharing! Looking forward to Isaiah 33:24 🙏🙏
@@ottochannel6556 Hey! Thanks for watching. I went through several blood and urine tests, but ultimately it came down to a DNA test to confirm it. If you reach out to the American porphyria foundation they will supply you with a free dna sample for reference and dna tests you can get.
porphyriafoundation.org/for-patients/about-porphyria/testing-for-porphyria/dna-testing-for-porphyria/
Its one thing reading about this in medical books n another listening to someone's experience. Could totally feel you on the chronic disease anxiety part. As a Stage 4 Endometriosis patient and a doctor applying for OBGYN, having experienced both sides of the table; so happy that you've decided to share your experience. Hit home on the "normal" n "non-attack" days distinction. The first time I was diagnosed, I felt helpless as a medstudent transitioning to being a doctor. The complications Endo brings with it made me negative But then it came at a juncture where I am to pick my medical speciality. Kinda perfect timing. Turned my life upside down for sure. Every word synced so much🙏🙏🙏 Especially the "I'll probably die from it". Voiced out my thoughts.
I see you!!! THANK YOU for your amaizing video!!!!
My son and I has VP. So no sun either. So glad I have found you!!!!
Thank you for watching! I greatly appreciate it. I’m glad you found me too! Sending some virtual hugs to you both.
Thank you for sharing your story so eloquently. I've lived with many of the same symptoms since childhood. I am now 70 years old and still don't have a definitive diagnosis as lab test were taken twice but weeks after I was sick. One doctor (neurologist) suggested AIP and most other doctors I met since then roll their eyes and say: "Let's just not go down that rabbit hole, chasing the Porphyria theory." I've spent my entire life avoiding triggers, which has been exhausting. I pray every day I never need to go to the hospital for the same reason you describe so well: "I know more than they do." My story is simply too long to put in a few words, but with new information and knowledge and connecting with folks like you, I don't feel so lonely and isolated any more. I am stronger because of it and I know you are too. I know you will make peace with this in due time.
Thank you so much for your thoughtful comment Esther. It will forever rub me the wrong way how doctors can just push something off without further testing. I feel like saying “Me getting additional tests for peace of mind will put money in your pocket I’m sure, so let’s just do it anyway.” I’m so sorry to hear that after all these years you haven’t received a proper diagnosis. As I mentioned in the video, we lean on medical staff to help us and I’m fortunate to realize that sometimes you need to make a stand and challenge what they think is best for you. I’m happy to hear this video resonated. I wish you nothing but the best and great health for years and years to come 🙏
@@andrew.mcmanamon So grateful for the Porphyria Foundation 💜and their offer to do DNA testing. I have the forms now and will persue that with my doctor at my next visit in May. Stay strong, take good care of you, and continue to do your good work inspiring others to persevere.💜
@@egrantva I’m so glad you were able to get your hands on those. I wish nothing but the best for you 🙏
Thanks so much for sharing your story and supporting the APF. I have HCP and went nearly a decade undiagnosed and bed ridden. I used to have my story up on here but also have a podcast This Girl Is Sick! I share my journey.
Thank you so much for watching Emily! I'm sorry to hear it took so long to get diagnosed, but your stories and struggles are helping so many people I'm sure of it.
Thank you for your outstanding post, my well-spoken friend! Your experience is similar to mine, although I'm now 73 and have been dealing with porphyria for 16 years. Attacks are no fun, although I do find some dark humor in explaining porphyria to doctors, well intentioned and otherwise. At one ER visit, the attending, after discussing my symptoms, excused herself and returned a few minutes later asking more specific questions. "Did you just Google porphyria," I asked. She blushed quite deeply. As I have aged, I do find the fatigue to be more of a challenge, and strive to work through it. A few things I've learned: Those cysts in my liver are like feral cats and the homeless; you can get rid of them but they come right back. Changes to my stomach walls are from porphyria, not cancer. (That was a scare!) Thickening of my bladder lining is due to porphyria, not cancer. (Give me a break on assuming everything is cancer!) And no, I don't present at the ER for the Dilaudid, especially given that my last visit was six months ago! Be well on your journey and thanks again for an amazing post.
Thank you so much for watching Terry and sharing some insight on the 16 year relationship you and Porphyria have had. I have noticed the conclusions these doctors jump to and how they refuse to label this “issue” as porphyria despite the diagnosis and the uncertainty this disease causes to your whole entire body. I truly hope we can create so much awareness that we are no longer questioned. I heard the average time it takes to get diagnosed with porphyria is 15 years, and I know a lot of that has to do with the denial of the medical staff.
@@andrew.mcmanamon The first challenge is convincing medical folks that "non-existent" and "rare" are not the same. 😁
Omg how did they find the cyst in your liver?
@@LolaMarie-z9s MRI
@@andrew.mcmanamon
It was 6 years in 2009. They keep getting worse.
Se poate traduce in romana. Sunt diagnosticata cu porfirie si as vrea sa cunosc mai multe detalii despre boala
I have AIP with photophobia and UV sensitivity. I self treat. I use zinc sulfate with 15% sulfate. The APF suppressed this information of a simple inexpensive way to treat yourself for several years due to their connection to panahematin. Hope is out there.
I get panhematin WITH ALBUMIN without a port. Not everyone can do that but albumin did stop that for me and did not need a picc line or a port.
Thank you for sharing your life story with us your very interesting as you speak ! Your not negative just learning daily it’s good your talking to help others because Drs don’t listen no one know your body but you ! Your a cool keep moving forward know how important you are hugs😊💪❤️🙏
Thank you for watching and for your kind words! I appreciate it greatly.
I'm being tested for this after decades of suffering. 😢
A Doctor Who practiced medicine in Europe for 20 years where porphyria is common suggested that instead of Penhamatin drink a cup of pancake syrup, or eat a lot of ice cream. That has worked for me.
What is the science behind that?
@@andrew.mcmanamon he said that basically is thick glucose. I have used that when I am in attack and my entire body hurts. I soak in a hot Epsom salt bath and do pancake syrup and ice cream. I’ve had it all my life so learned over time some things that worked for me. It was correctly diagnosed in 2012 after being told it was celiac disease, lupus, and other things that did not pan out because it is not an anti-immune disease. I am told my heme turns acidy and the glucose neutralizes the acid. I get sores over my entire body, too.
I am also South African. My problem is I can tolerate very very few medicines and in extremely low dosis. Porphyria was mentioned. Is it a possibility?
Is there a place in South Africa also who know more about porphyria?
I was just diagnosed. Ive got a lot of learning to do!
Hey Liz! Thanks for watching. Definitely use the American Porphyria Foundation as a resource, the website is jammed pack full of useful information. There’s also several Facebook groups to join to just chat with a lot of people dealing with this everyday.
porphyriafoundation.org
Thank you for sharing your experience with this disease. We all need to help each other and give tips on what works for one. We need to check for liver cancer as we are 80% more likely do develop it. Is there a way to contact you?
Hi andrew. I was diagnosis yesterday. And no information in the internet. Can you add Turkish subtitles? Please 😔
Please 🙏
Thanks for sharing ❤
Thanks for watching! ❤️
I am trying to get a diagnosis but running out of time. I am at the abyss and don't know how much more I can stand. I wanted to ask if you also have headaches? I have symptoms all the time. This started 5 years ago. I have severe, constant headaches, constant abdominal pain, have to eat constantly to feel somewhat better, anxiety, depression, extreme muscle pain in my face, neck, back. Pins and needles in my arms, hands. I have had hundreds of tests and procedures, but no one can tell me what this is. I appreciate any information about your story and recommendations.
Have you reached out to the American Porphyria foundation to get information on a genetic test?
I havent, but I will certainly look into that. My neurologist doesn't think I have this.
I have ALAD Porphyria; diagnosed last year at 30 years old despite having symptoms since birth and almost monthly attacks. Mayo clinic finally diagnosed me last year but didn't know what to do other than send me to researchers. I need to find a way to get hematin infusions but no one locally knows anything about Porphyria. Do you have any advice?
How long do attacks last and what are the triggers? Today makes 7 weeks straight that I've been sick and my doctor thinks I might have porphyria. I've never heard of it before yesterday! I do have a lot of the symptoms, but not all of them. I will hopefully be tested in the next week.
I have been diagnosed with subcutaneous porphyria. It worsened over the years. It’s impossible to make my family understand the severity of it. No them have it so they think I’m faking something. It’s hard to find any doctors who really know what you can or can’t do if you have this disease
Agreed! 🙌
i found hot bath work for pain , dering an attack !!!
Pct porphyria treatment
Thank you so much for sharing this. I really am up against it.
Wish someone could help me get help, family / physicians dont care when your broke.
I thought i was the only one
Anyone out there that can help me get tested, fl medicaid doesn't GARA
🫶🏻🫶🏻🫶🏻🙏