Life is a struggle

I am an active carrier of AIP with recurrent symptoms and weekly heme infusions. I am a chemist too.

Written by TonioGt, published 7 months ago.

I was diagnosed after almost 30 years of the first symptoms, which have evolved very slowly - fortunately - thanks to the attention that I have for my body (and from foods that refused) and education that my parents have me did achieve, as well as the survival instinct of porphyria that the carriers have by nature.

In 2009, after years trying to convince me that abdominal pain, and the eyes were imaginary, I finally ended in a recovery room and, in the face of clinical evidence, they began to monitor seriously and soon discovered that it was acute intermittent porphyria.

So I begun immediately frequent and increasing heme infusional therapy, without having any relief at work, which a job that is well known for the high level of stress and the difficulty following a regular feeding cycle, nor able to retire despite having nearly 40 years of social security contributions (it is Italy).

Moreover, in that hospital I was followed by a dermatologist, while I have serious metabolic problems, and for years I was with a 'absolutely not working' thyroid, but without treatment and with an infection by staphylococcus that everyone took for porphyria. i had to go privately to check blood under other specialists and - later - to go in the hospital waving of the analysis sheets ... not to mention the years of unnecessary and poorly tolerated antihypertensive.
Needless to say that in last four years I have accumulated a score of twenty and more accesses in emergency room, four years were to be needed to be declared seriously invalid by a judge, after twice the statal insurance medical college had denied it.

After winning in court, I needed other three years (it is Rome) while still exposed at work, two different procedures and almost twelve months of several medical visits to obtain the right to protection by triggers in the workplace, but - despite having got what I asked for some time - I had to wait for over three months to know where or what on my destiny and and I had to pay a lawyer to unlock it.

By time, I am the administrator of two Facebook Groups ('Porfiria' and 'Mapping Porphyria'). Recently, I started to publish on web the information or news that I can find on line. http://mappingporphyria.wordpress.com/

Written by TonioGt, published 7 months ago.

One comment for «Life is a struggle»

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  • martacampabadal | published 6 months ago | Originally written in English

    Thank you very much for sharing your story with us! Your website is really good.

    How are you feeling today? How are you managing the symptoms?

    Cheers,
    Marta

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