Living with porphyria with 365 days of pain

The story of Vidhi

I have Acute Hepatic Porphyria which was diagnosed in 2022 but it took almost 8-9 yrs in diagnosis as it is a genetic disorder.
It is an autosomal recessive disorder in which your own body fails to synthesize its own heme hence your body is deprived of blood .
The precursors of heme formation get accumulated in your blood stream and act as toxins so wherever they get circulated they create some irritation in your visceral organs so I was presented with severe volcano like burning pain in abdomen with no relief from any medication and the episodes used to last all 24 hrs with sleepless nights plus severe anemia and it’s eventual complications.
The pain has no relation to any roentgenographic findings that’s why the disease remained latent for years .The docs ecen after siagnosis say that there’s no cure for the same .sp my epiaodes subside only after repeated transfusions .
I am a homoeopathic medical student myself have given all my exams medical n pre medical in pain which has no solution.
Fasting increases the problem and after eating the acute exacerbations are striked .
They say I won’t die directly due to porphyria but my may be due to complications but my quality of life is forever hampered .
It has its complications on all visceral organs especially bowel liver and brain so you may have convulsions, coma, limbs motility deprived , hemochromatosis due to excessive iron , heme or blood transfusions .
Besides severe anemia with my levels teaching even 3 gms of Hb it’s difficult to cope with this world .
God chooses people for difficulties which only they can handle so he chose me as no one in my family is even anemic and the doc told me that this disease happens to only 1 % people across thte globe may be registered and God chose me in those 1% , lucky though