Porphyria Community

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Acute porphyria Mexico

I have suffered from acute porphyria all my life. |My third son inherited it but he was neurologically affected and after 8 years it manifested in him, I know the name of what affects us both, God gives us signals but not all of us are ready to understand them.

It started in my puberty, an unbearable itchiness that hurt my skin when scratching, always vulnerable to the sun, now towards my menopause it reappears without control, no creams, nor corticoides nor antihistamines, all is symptomatic and temporary.

But my third son, at 11 years old, had epilepsy after treatment with sodium Metamizole IM. Until now, almost 8 years have already went by, without diagnosis and being drug-resistant, there was always something that would tell me it was his liver, but no doctors, specialists, friends or relatives would support me because it seems so unknown as well as puzzling.

Today, even without a certain diagnose, my heart tells me I already know our enemy, I only ask God for wisdom to give my child quality of life, because his health is so depleted for lack of knowledge in the matter, I hope this suffering would be more treated in the medical arena, there are so many like us that sail through the darkness of diagnoses and failed treatments. Thank you for reading me.

Dear Isabela
Reaching out to you- letting you know I read your posing. So you know you are not alone.

My heart goes out to you.
It is bad enough the pain of Porphyria for yourself but I cannot imagine the pain of seeing your children suffer also.

I will keep you in my prayers and YES God does gives us signals. Alas He does not always give us the answers we want. He did answer mine when I asked for what was wrong with me. GOD not my doctor had me discover Porphyria. I found a doctor to test me and yes I have Porphyria.
Blessings and prayers for you and your children,