Oh My Goodness ~ Finally I have a place. I have had PCT for 16 years. I am so surprised at how far information about the disorder has come. I am currently experiencing an episode and am so overwhelmed at knowing I can reach out to others. I am considering donating my body to science and was hoping to find a Porphyria Association. Time to get my affairs in order. Thanx. Ginny
My porphyria is undiagnosed, I have practically done all the studies to narrow it down to possibly Hereditary Coproporphyria and my mother has mild symptoms of it too. She can go in the sun but it makes her sick... if I go in the sun, even just my hand, I start to experience an attack and sometimes just wish to end it all. I have not been to a real doctor in 8 years because I was accused of causing myself harm for attention. I stopped seeing people because I have autism anyway. I have no help.
I have been dealing with Congenital Eythropoietic Porphria since my diagnosis 40 yrs ago. I use medical marijuana to deal with the pain from the neurological effects because of the CDB's in marijuana. The marijuana also relieves much of the depression as well.
Many blessings to all suffers of the heinous disorder.
Im 18 and have erythropoietic protoporphyria, its painful. I get it from going into sunlight for more than about an hr, some weeks when I might spend too long in the sun, i will lie in bed with ice and fans going full blast and still be in so much burning pain i cant sleep, so spend days crying in bed for sleep which is the only thing that can help. when i was younger mum would come into my room to to comfort me, and one morning i asked, 'Why do you come into my room at night and hurt me mum?'
Ok I hate to sound like a know it all but this thing has a cure to the point of no more pain but still some sun sensitivity and thats it. You have to go 100% vegan organic. No more soaps no more microwave, no more cleaners. No more chud food. No more fryed foods. No more many foods. Can you do this if its worth your life. Its up to you, but it work. No more bleeding no more Dr's. just organic vegan without sugar and sulfa foods. My husband came back from his death bed. You all can do it to.
Unfortunately that's not an option everyone has. Me for instance. There isn't anywhere around my town that sells strictly organic foods. Not only that in the spring when the farmers are spraying well, it's not too nice to me. I'm also exposed to some chemicals at my job that midly irritate me but, I gotta put food on the table and in this economy I'm not chancing on finding another job just to lose it. I do some organics. It's helped some. The pain isn't as bad but, I still have it
I drive a crap old car wear crap holey clothing sitting in a holey chair with holy shoe's, I have holy sheets and towels. I live in the hood and very poor except for the Internet and cable, guess I look very poor, someone tossed me a quarter when I was walking down the street and said buy a comb, so I did, but I use organics at the store. I remind myself substance is more important than appearance. Now I'm growing a garden finally. Sorry about your Chem exposure at work. Maybe a garden ?
We did do a garden this year. I haven't worked in it much though because even though I have aip the sun still bothers me some. I did buy some UV resistant clothing and that has helped.
Interesting-you wouldn't by chance have any type of literature to back this claim, would you? The reason I ask is that a) I have porphyria, b) I'm always interested in academic research related to the subject (as I work in health care) and c) one of the treatments for an acute exacerbation is in fact IV glucose/a high simple-carb diet, so some would think it may follow that to reduce/cut-out dietary sugars could in effect, pre-empt an attack. Fasting certainly can.
I have E.P.P. as well!! I found this video by accedent - REALLY cool. I've had this since I was 2 or so... I think it is a Hungarian gene from my dad's side!
Hi how are you? i´m from Perú...i´m researching to try to understand this sick. i know someone who has porphyria...she is in coma since two weeks ago...the doctor said to her family that they need almost a u$ 60 000 for her treatment...and her family doen´t have the money...actually a lot of people here are doing some much activities to recaud the money They need 32 panhematin.and the cost of this medicine is 2500 us dollars..how was treating yourself? explain me more please, i want to help her
It helps with all porphyria's to limit sun exposure. Pct is one of the ones that are associated with having to live in darkness yes. Each Porphyria reacts different..each in their own ways. There are lots of good sites that explain Porphyria and the different types.
=)I'm not sure I got this expression right(problems with language)-so...it is the type with which you have to be in the dark always, but with other types of Porphyria one may act as usual and it's not dangerous, correct?
Oh My Goodness ~ Finally I have a place. I have had PCT for 16 years. I am so surprised at how far information about the disorder has come. I am currently experiencing an episode and am so overwhelmed at knowing I can reach out to others. I am considering donating my body to science and was hoping to find a Porphyria Association. Time to get my affairs in order. Thanx. Ginny
dearvirg6 1 month ago
I have AIP.
SuperEvilArtist 9 months ago
My porphyria is undiagnosed, I have practically done all the studies to narrow it down to possibly Hereditary Coproporphyria and my mother has mild symptoms of it too. She can go in the sun but it makes her sick... if I go in the sun, even just my hand, I start to experience an attack and sometimes just wish to end it all. I have not been to a real doctor in 8 years because I was accused of causing myself harm for attention. I stopped seeing people because I have autism anyway. I have no help.
Lycantis1 1 year ago
Thank you to Everyone Who Contributes To Help Those of Us & Those Who Help Contribute To Funding For Research. Thank You From Canada (O:
(Please Help Re-Open The Doors Of The Canadian Porphyria Association)
moonbearwolf 1 year ago
which kind of porphyria mutilate your face?
gerwin0 2 years ago
I have been dealing with Congenital Eythropoietic Porphria since my diagnosis 40 yrs ago. I use medical marijuana to deal with the pain from the neurological effects because of the CDB's in marijuana. The marijuana also relieves much of the depression as well.
Many blessings to all suffers of the heinous disorder.
LillithDarkwraith 2 years ago
hi
im from germany and i have aip
traxisone 2 years ago
Im 18 and have erythropoietic protoporphyria, its painful. I get it from going into sunlight for more than about an hr, some weeks when I might spend too long in the sun, i will lie in bed with ice and fans going full blast and still be in so much burning pain i cant sleep, so spend days crying in bed for sleep which is the only thing that can help. when i was younger mum would come into my room to to comfort me, and one morning i asked, 'Why do you come into my room at night and hurt me mum?'
Bryan6446 3 years ago
Congenital Erythropoietic Porphyria*
qtallstar12 3 years ago
I have Congenital Eythropoietic Porphria
mine is the rarest case out of 300 in the whole world. I feel special.
qtallstar12 3 years ago
Ok I hate to sound like a know it all but this thing has a cure to the point of no more pain but still some sun sensitivity and thats it. You have to go 100% vegan organic. No more soaps no more microwave, no more cleaners. No more chud food. No more fryed foods. No more many foods. Can you do this if its worth your life. Its up to you, but it work. No more bleeding no more Dr's. just organic vegan without sugar and sulfa foods. My husband came back from his death bed. You all can do it to.
porphyria2 3 years ago 2
Unfortunately that's not an option everyone has. Me for instance. There isn't anywhere around my town that sells strictly organic foods. Not only that in the spring when the farmers are spraying well, it's not too nice to me. I'm also exposed to some chemicals at my job that midly irritate me but, I gotta put food on the table and in this economy I'm not chancing on finding another job just to lose it. I do some organics. It's helped some. The pain isn't as bad but, I still have it
boomer76 2 years ago
I drive a crap old car wear crap holey clothing sitting in a holey chair with holy shoe's, I have holy sheets and towels. I live in the hood and very poor except for the Internet and cable, guess I look very poor, someone tossed me a quarter when I was walking down the street and said buy a comb, so I did, but I use organics at the store. I remind myself substance is more important than appearance. Now I'm growing a garden finally. Sorry about your Chem exposure at work. Maybe a garden ?
porphyria2 2 years ago
We did do a garden this year. I haven't worked in it much though because even though I have aip the sun still bothers me some. I did buy some UV resistant clothing and that has helped.
boomer76 2 years ago
Interesting-you wouldn't by chance have any type of literature to back this claim, would you? The reason I ask is that a) I have porphyria, b) I'm always interested in academic research related to the subject (as I work in health care) and c) one of the treatments for an acute exacerbation is in fact IV glucose/a high simple-carb diet, so some would think it may follow that to reduce/cut-out dietary sugars could in effect, pre-empt an attack. Fasting certainly can.
almostseethru 1 year ago
I have E.P.P. as well!! I found this video by accedent - REALLY cool. I've had this since I was 2 or so... I think it is a Hungarian gene from my dad's side!
Gouldeyecandy 3 years ago
Hi how are you? i´m from Perú...i´m researching to try to understand this sick. i know someone who has porphyria...she is in coma since two weeks ago...the doctor said to her family that they need almost a u$ 60 000 for her treatment...and her family doen´t have the money...actually a lot of people here are doing some much activities to recaud the money They need 32 panhematin.and the cost of this medicine is 2500 us dollars..how was treating yourself? explain me more please, i want to help her
elpiscoesperuano 3 years ago
i have that disease,
you can still live full life with it
niltsirk 3 years ago
It helps with all porphyria's to limit sun exposure. Pct is one of the ones that are associated with having to live in darkness yes. Each Porphyria reacts different..each in their own ways. There are lots of good sites that explain Porphyria and the different types.
darkangeleyez62 4 years ago
I mean, "places".=) Cool song. Is it Melissa Etherige?
Daliya1 4 years ago
Porphyria cutanea tarda is the one your thinking of as far as going out into the sun or lights.
darkangeleyez62 4 years ago
=)I'm not sure I got this expression right(problems with language)-so...it is the type with which you have to be in the dark always, but with other types of Porphyria one may act as usual and it's not dangerous, correct?
Daliya1 4 years ago
Terribly sorry...but I thought people with it can't go out into the sunlit plates...Sorry again. and God bless you.=)
Daliya1 4 years ago