Sunday, April 12, 2009

Non existent support in SA and other issues

I asked mom (Rose) about what support there was for Porphyria sufferers at the time and of course there was not much available. However when the sisters were diagnosed they were provided with a fact sheet. Later they were provided with information about the Canadian Porphyria Foundation and once registered received their newsletters on a regular basis. It was a great comfort to learn about this organisation and the information received from them was really very valuable. There were also many myths associated Porphyria which were dispelled through case studies and other information sent out. Mom said that in the 1970s it was up to her to make contact with the association and no further assistance was provided by South African Medical personnel at that time, in fact most doctors did not know or understand what was required to support Porphyrics.

Mom lost all faith in doctors over the next 30 years. Many times she was prescribed medication by a doctor which could have caused a major life threatening reaction. Often she would be saved by a pharmacist who would double check the medication only to find it unsafe for Porphyrics. Many medications would make her feel ill and she would end up throwing it away. Having lost faith in that doctor she would never return (this also meant doctors she attended would not receive feedback from mom and probably never learnt of the danger or "near miss" situation they caused their patient!) There was a seemingly endless search for a doctor she could trust. Each negative experience caused her to have less and less respect for the medical profession as a whole.

I am pleased to report that mom has now finally found a doctor with knowledge of Porphyria and who is willing to listen.

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