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Case Histories
Notes From My Porphyria Journal


     I have been at a complete loss as to how to go to about this....a writing of my porphyria story. Yet this story needs to be told because others needs to know that this frustration is a part of the journey of porphyria.

     I have had porphyria symptoms for a long time and it really bothers me that I can't find out for sure.the type of porphyria and get on some preventive therapy. I know repeated attacks are not good. I am already on disability and don't need to get any worse.

     The only thing a doctor has said to me is, "Well, when you have one of these attacks, come to my office!" They just don't understand how serious it is! And just how does one fit a porphyria attack onset into the few minutes of a busy clinic schedule, or get the receptionist to realize that my condition is serious enough to see the doctor whom has requested my appearance during an attack?

     There were times in my life, because of the unsafe drugs prescribed that I thought I was losing my mind. Of course, at the time, I did not know all of the mental confusion was the drugs and loss of potassium and electrolyte imbalance. But, thankfully I have always had a strong faith and this was the only way that I could ever drag myself from the bottom of this cold, damp, dark, endless tunnel. I was so close to depression and yet had enough instinct that I needed to toss away the drugs, keep fluids going down, and use some light therapy with a desk lamp and listen to some lively music to pull myself back to a sense of normalcy.

     I can tell you honestly I will never allow this to happen to me again. It's as if the anti-depressants had an opposite effect on me. The more I took them, the more depressed I became. Thankfully I knew this was totally against my nature.

     In the battle of life long porphyria one will have to deal with the demon of depression if one allows themselves to use many of the drugs which are listed as Unsafe for porphyrics.It has long been known that the anti-depressants are most harmful for porphyria patients, and yet that is what most porphyria patients are presecribed when they described any of the areas of mental confusion or other maladies of the CNS.

     Each of us need to fight the depression ourselves. One of the most helpful things is a sense of humor. If you do not have one, cultivate one as you will need it to survive even a trip to a physician's office.

      Since today I scrutinize every drug I am prescribed, and advocate the best drugs are no drugs, it is so wonderful to wake every morning with a clear head. Brain fog has overhwhelmed me for so long and robbed me of years of my life.


     I had more intractable PN in my legs than ever before. But of course we all know that peripheral neuropathy is also a part of the porphyria medical condition. Neurontin has been used in the past but like I said, I truly believe that the fewer the drugs the better I feel overall and Neurontin is one of those you must take daily and graduatlly build up and then graduatlly reduce if you want to stop. I only have the seizures during an attack and so why would I drug myself daily for all those days which I am seizure free?

     Then there are my blisters, skin rash and lesions. The "typical" lesions, like I've seen in the photos....I wonder about so many things, like why the people with the very marked lesions seem to have them mostly on hands and top of head and face, where the sunlight does the most damage. The dermatologist told me it happens where the skin is exposed directly to the sunlight. But I go rarely into sunlight, and the hyperpigmentation and hairy growth appears on the underside of my left arm where sun does fall and which is usually covere by a blouse or sweater sleeve. But I continue to wonder and ponder what the answers might actually be.

     And what is there to be said of prognosis in porphyria? No one seems to know anything.

     I had an appointment at 11:00 a.m. one day and managed to shower and dress, then get into the car on time. However, the previous three days I wouldn't have been able to walk to the car! When I got to the appointment, I parked and was overwhelmed by the certainty I was a day early, that I'd only been ill for five days. This was progress for me?

     Of course when I go to see the physician it always happens that I have made marked improvement from the time I make my appointment to the time I actually see the physician!

     I was aware that I'd made rapid improvement since the day before....I muddled through the confusion, actually enjoyed a thorough exam by my physician, and noticed that hour by hour I was pulling out of still another attack. I told my physician it was as though the glucose with added electrolyte was giving me a new lease on life. It was very noticeably.

     There I have had porphyria symptoms for a long time and it really bothers me that I can't find out for sure. the type of porphyria and get on some preventive therapy. I know repeated attacks are not good. I am already on disability and don't need to get any worse.

     The only thing a doctor has said to me is, "Well, when you have one of these attacks, come to my office!" They just don't understand how serious it is! And just how does one fit a porphyria attack onset into the few minutes of a busy clinic schedule, or get the receptionist to realize that my condition is serious enough to see the doctor whom has requested my appearance during an attack?

     I still have mental agitation during the times when I am flirting with an onset of an acute attack. I had glucose yesterday because I was in pain and agitated. It seemed to help the pain but the mental agitation continues.

     There have been times of paralysis and times where the pain would be so great that I would simply pass out. They did a EEG. They also did an x-ray. Then they did an MRI. Next came the EMG. I had happened to make a copy of the new UNSAFE drug list before I went. Thank God, because when I was talking with the radiologist I found something and then he went to double check the ingredients of the dye you have to have infused. I looked up at the radiologist as he returned and he sat down beside me. Within two seconds I passed out. I did not remember doing it. I passed out a couple more times after that. All of them the same, Not knowing where, who, or what I was. Didn't know anything. I couldn't tell my physician where I was or how long I had been there.

     Another time I had some bad attacks followed with passing out I found out that one of the meds that I had been taking was on the Unsafe list. The drug was called Klonopin. It's not on the other list. When I told the nurse that, she left word for the physician. When he got there he told us that he was not going to take me off of it. We sat there and figured it out that was why I had been passing out ever since I had been on this drug. Very scary.

     It's taken me so many years to come up out of blithering darkness to where I can try to organize analysis, or for that matter write this medical journal. Whether attacks like this last one, right after a virus was defeated and the bacterial war started, or the chemical exposures effects are always different is a toughie. I have "come down sick" from being chilled or being caught from too many brief moments in the bright midday sunlight. I lose information when I'm sick. Memory loss makes it so difficult to organize my thoughts about which does what. So porphyria really affects one's cognitive abilities. I play scribble and do recall games in order to keep up my mental alertness.

     Another gift of porphyria is breathing problems as well as my loss of gait from time to time. It gave me breathing problems big time followed by bulbar paralysis and then respiratory paralysis and being hooked up to a life support system for five days one time and four days another time. I was told by the critcal care nurse that such severe porphyria like this is the number one cause of death among porphyria patients due to porphyria.

     Sometimes I walk like a drunken sailor. I have a balance problem after my PN strikes.

     Porphyria is so misunderstood by family friends and yes, even the medical profession.I need a lifeline and have found my porphyria support group just that. We are very close and like an extended family. We are there for each other when we have to go to doctor appointments or end up at the hospital. With home infusion for so many of us six of us flush each other's i.v. lines and change the PICC line dressings. We can understand the torment we have with reactions to adhevise tapes, paper tapes and some to the surgical tagaderm tape. We also know what it means to have people stare at our PICC iv access lines.

     I am a flesh and blood person and need personal contacts, feedback, acknowledgement and much healing, not just physically. I now live a life of aloneness apart from "society" except for porphyria e-mail lists and a few loved ones, friends and relatives who accept ME as far as they are able,... that I have porph and am quite different from them.

     And something I would like to say here to nurses and medical staff as well as my physicians that serve me. I always try to be sensitive to other people's feelings as much as I am able to, because I have sensitive feelings. I am not so socially well endowed as some of you and ask you to remember that. As a porphyria patient who grew up as a child with porphyria manifest by skin lesions and ongoing "flu like symptoms" I was traumatized in many ways.

     I developed in the intelligence and knowledge areas because that was permitted and encouraged. I have worked hard at this. My traumatic childhood has left me impaired in other ways. I have not been able to have children. Because of the seizures and the ongoing PN I can not drive a car, or work in a place that has steps or a lot of walking.

     Porphyria is not something that any of us asked for. It was given to us at birth and we have each discovered it somewhere along the way. For many it is as an adult which is a blessing in disguise. Our parents were likewise victims of this disease as were one of their parents.

     There is no cure and it will never be genetically blotted out. There may come a time that there is a cure for each given generation, but genetically this disease will always be passed to the next generation. So in closing, maintain a good self image, have a deep faith, and never give in to this disease or to critics such as well meaning physicians who will without a doubt tell you time and again that it is "all in your head". To be more exact it is all in the blood.
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