Hi porph gang, I have Porphyria, not CEP/HEP but HCP (Hereditary Coproporphyria). I too am on the Yahoo group, you can apply to join by going to Porphyria@yahoogroups.com
/subscribe. many on that group are very experienced. Our advice to most people is to do the main things: learn what triggers start attacks and avoid them/look in the Files as to what things are main triggers. Main triggers are many drugs (look on safe/unsafe list such as NAPOS), a few foods, and many environmental poisons which we have trouble detoxing because of the afflicted enzyme in our hemaglobin synthesis pathway. (Each type has a different afflicted enzyme). We also have to live a regular paced life and avoid alcohol at all costs.
I don't know much about CEP/HEP and there are few of us on the Porph forum with it. The only porph people who usually have to have phlebotomies are those who have PCT, Porphyria Cutanea Tarda, who do store too much iron.
I myself have other diseases as well as Porph, and I have to have phlebotomies for one of those, which is probably unrelated to Porphyria.
Porph is a neuro-visceral or neuro-psychiatric ailment. The nerves get damaged and affect many body functions. The acute gastric pain many have could be as much due to the nerves being damaged in that area as to other things: but a good diet and avoiding triggers helps that a LOT. Please seek the files at Porphyria@yahoogroups.com
to see what foods you should be eating; a good porph diet is specific, not just all-purpose.
Wikipedia has an excellent article covering Porphyria. Surprised how good it is!
Doctors cannot do much to help you except when you are in acute attack. But my doctors are very good at looking up all drugs before prescribing. For instance, my doctor looked on NAPOS to discern which anti-histimine I can take, and what a relief that was to find one I could take! I thought I could take no anti-histimine at all. We can't take anti-depressants at all (except in very very few cases), we have limitations on which anti-biotics we can take, and there are many drugs virtually prohibited for porph patients. I took many of them before my late dx, and thus have nerve damage which gives me Peripheral Neuropathy.
Yes, it is important, Hawk, to discuss having children with your fiancee. And to know what your odds of having a porph child are. It's 50% for most of us, but with CEP I have no idea, it may be recessive. Find out.