Since July, I have been talking a lot about having hereditary coproporphyria (HCP), which has made some of y’all a bit curious about what it is exactly that I have. HCP, as the name suggests, is a genetic disorder that impacts how my body produces heme. Heme is the part of the blood that carries iron and porphyrins (a type of proteins). These combine to become hemeproteins. Hemeproteins are responsible for the oxygen levels in the blood and electric communication. My body often produces too little or too much. How much sun exposure I have greatly impacts whether or not I produce the correct amount of heme. I think that I can tell when I have too much heme or too little, but it is just a guess on my part. I do not go and get tested when I am having an attack because I know that I do not want a heme transfusion, which is the only known treatment and is not guaranteed to make me any better. Because heme is a blood product, receiving regular transfusions increase my risk of catching other blood borne illnesses. I have opted to not receive any transfusions.
One symptom I associate with having too much heme is that my blood feels very corrosive and thick. I am also prone to headaches and dizziness. Also, I feel like my food cravings are more dramatic. For example, the other day I took a sip of hot chocolate and my mind screamed at “me stop or you will die.” The symptoms I associate with too little heme is the sense that my blood is too thin and feeling like I am being electrocuted. The symptoms I have, no matter what has triggered the attack, are intense food cravings, pain everywhere but mostly in my lower left abdomen, blurred vision, nausea, diarrhea, mood swings, depression, and insomnia. The symptoms I have all the time are tachycardia (rapid heartbeat) and hypertension (high blood pressure). I am also prone to skin lesions and infections such as staph infections, although it has been a while since that has happened, but I am taking much better care of my skin. It is tough having a sun-reactive blood disorder while living in the land of the rising sun, but I am getting better at managing to limit my sun exposure and being more aware. Feel free to ask me anything about my HCP. I am an open book.
Hi there! Thank you for sharing about your coproporphyria. I’m curious about the mood swings that you experience. Can you please tell more about them? Is there any pattern to when they occur? I ask because I suspect that my heme metabolism is also affected by one of the porphyrias, and I have experienced mood swings in the past. When I mentioned the possibility of a porphyria to my psychiatrist, he revealed that he had no clinical experience treating patients with porphyria, nor did he remember observing patients receiving treatment for it in his training.
(Kisstopher here.) I am a therapist by trade, but I have never worked with a client who has porphyria becuse it is really rare. The test for it is really simple. If you place your urine in the sun and it turns burgundy, green, or blue, then it is highly probable that you have porphyria.
For me, the mood swings are not predictable because they are a part of a porphyria attack. I know that if I spend too much time in the sun, fast, eat too much iron, or any of a whole host of other things that I can have an attack, which changes my moods.
How I cope with the mood issues and changes is by letting the people in my life know when I am having an attack. I don’t always handle the mood swings in the best way. Sometimes they do get the better of me, and during these times I ask for patience and forgiveness. I also know that this is only a part of my life and that it will pass. The times when it gets the better of me, I lean on my husband and ask for help. Asking for help takes practice but I made lists of things I would want when I feel sad, angry, anxious, or confused because of my HCP.
I don’t know if this helps. I hope that it does. I have traveled across the US and in Europe looking for a doctor who knew how to treat my HCP and never found one. I used to belong to an online group of people with porphyria and what I learned was that their answers were not my answers. I think we all have to find our way of coping and what works for us. I hope that makes sense. Feel free to ask any questions you may have; I’m an open book.