Managing Porphyria

With careful attention, I have been able to avoid acute attacks for several months; though, I still have to deal with the general yuk that I feel all the time.   I know that the type that I have is Acute Intermittent Porphyria; but, I am convinced that the problem is chronic…the acute attacks are intermittent.

What I have to do is eat every couple hours and avoid any porphyria triggers and anything that will cause diverticulitis.   And, I have to check on glucose tabs or drink water with glucose mixed in; BTW – drinking a lot of water is necessary, too.  Needless to say, my diet is boring.  Start the day with vegetable and chicken soup (very little liquid to solid ratio) over pasta.  The next meal will be a turkey sandwich; and a couple hours later, I’ll have a baked potato and some chicken.  …repeat every couple hours, keeping in mind to keep the carb to protein ratio high…  I get so tired of eating.   Snacks that work are (low fat) Trisquits, York Peppermint Patties, and some low fat devil’s food (sorry God) cookies from Publix.     And, I have to remember to eat something right before bed, so that I don’t wake hungry in the middle of the night.

So, last night I am munching on Trisquits right before going to bed.  Then, I realize that I hadn’t eaten my meal before bed; so, I thought a little protein to go with the Trisquits would suffice.  Bad idea, the pain started right after I lay down.  Donnatal and about 8 glucose tabs later, I was good.

I shouldn’t complain; there are so many porphyria sufferers that have it much, much worse.   My heart goes out to them.

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2 Responses to Managing Porphyria

  1. Kimberly says:

    Hi,

    I’ve been reading your blog. I appreciate that people are taking the time to do this. I was wondering if you have changed your diet at all. Can you please email me and tell me what you are eating daily. I don’t know what to eat. This morning I made pasta with chicken broth. Can I have coffee at all? What about black berries? Anything you can email me would be helpful as I’m starving and don’t want to eat unless I know Im not going to have an attack.

    Thank you so very much,

    Kimberly

    • Greg says:

      Hi Kimberly,

      Diet, in my mind, is the key. Yes, avoiding various substances and aromas is very important, too; but, identifying dietary triggers and irritants is paramount. Pasta and chicken broth sounds pretty good; but, you would really have to check the ingredients in both. It is really surprising the additives that make it into our foods. I really don’t know about blackberries. I do feel that, in general, fruits and vegetables are very good to add to our diets; however, many are hard triggers for me (cucumbers, red grapes, broccoli, etc). There is a danger inherent in fruit – fruit generally has much more fructose than glucose; and, it is very important, for people with porphyria, to keep their glucose intake higher than the fructose intake. The best dietary advice that I can offer is the guidelines that we’ve established for me on this page: http://www.myporphyria.com/diet/

      Please keep in mind that we are all different; what is safe for me, might hurt you. And, what is a problem for me, might be great for you.

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