Would it be Porfiria?

My son aged 9 years old, no one knows what he has, at last they presume something concrete: Porphyria

Written by maricruz_pita28, published 8 months ago.

Hi, I am from Lima, Peru, my son has complained about pain in different parts of the body since he was little, without any justification, I’ve come the emergency room countless times always for the same reason: abdominal pain without any apparent focal point, he has been interned in hospital several times also for the same thing, but this doesn’t always happen, there are seasons in which he’s really good, many times his ears turn on and come really red and warm, his bed leads to the window and he always says that sunlight bothers him, so he builds up a "campsite" in his bed with a thousand blankets until forming a sort of cave where it’s quiet inside, he covers himself completely up to his head to play with the mobile below the blanket and not be bothered by light, once in a while he urinates orangey and now he’s even urinating reddish, he’s been done a regular urine exam and they say it’s not blood in urine, he’s been interned for a week, but he’s feeling fine since yesterday, he’s eating a lot as usual, and he urinates normal colour, doctors say that in order to make the porphyria urine exam he has to be in the midst of a crisis, I don’t know if it is like that, I have searched for information in the Internet until I bumped into this organization, my son is 9 years old, he’s about to lose his school year, because on the days he’s feeling really bad, with the stomachache, nausea, he also has a headache very often, I don’t know if any of you have had a similar symptomatology, please it would really help if someone has had this as a child, or if any parent has lived this with his son, but above all I would like to know which is the prognosis for Patients with porphyria, please, in my son’s school they think I am negligent because of making him miss school for just a stomachache, but if they saw how he buckles in pain and how he screams they would understand, thanks in advance for your attention.

Written by maricruz_pita28, published 8 months ago.

One comment for «Would it be Porfiria?»

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  • martacampabadal | published 7 months ago | Originally written in Spanish

    Hola Mari Cruz,

    Bienvenida a la comunidad de Porfiria.

    Has contactado con la asociación Peruana de enfermedades raras?
    Tienen una página de FB: https://www.facebook.com/enfermedadesraras...

    Si no te responden dímelo que creo que tengo otra forma de contactar con ellos.

    También visita la sección Miembros de la comunidad. Quizás encuentres otros afectados de Perú que te puedan orientar.

    Mucha suerte,
    Marta

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