ivory Posted January 5, 2007 Report Share Posted January 5, 2007 Hi my name is Sharon and I'm new here. we left SA in 67 for Auckland NZ but it was too cold and wet for me there so in 86 my 3 children and I came to Brisbane. I fell in love with this place and felt like i had come home. All my life I remember my mother having attacks which no Docs and ever DXed then about 6 years ago I started having them and soon after my children all started, the Docs here had no idea and so began hell. I have done the rounds of the hospitals and so forth then about 2years ago I put in all my "bizare symptoms" into the web and out popped VP , South African VP at that. I was told it was to rare to have but I finally have a neuro who accepts and helps ( in as limited a capacity that the medicare can)my post to all leaving SA is to get DNA tests done before you leave because in Oz you'll be in big trouble ifyou become ill with this, the tests and treatment are woefull over here - you have to explain to the ER 1 your illness and 2 your treatment (there is no cure) Because of this disease we can no longer enjoy the wonderful Oz lifestyle. This disease comes from the Africaaner and SA has the largest population iin the world - 50% chance of inheriting it "Goes to show you can take the girl out of Africa but you can't take the Africaaner out of the girl". If you are worried about a positive affecting you immigration get your tests started and then have the results forwarded after you arrive. all the best sharon ps Queensland is fabulous Quote Link to comment Share on other sites More sharing options...
Hendie Posted January 5, 2007 Report Share Posted January 5, 2007 Hi Sharon,Your condition is not that uncommon, and it has been traced back to French ancestry, as well as some German if I am not mistaken. My grandmother on my father's side died in hospital because she received the wrong medication, and the doctors didn't know she had Porphyria. My dad had it, and I have inherited it too. And funnily enough my wife also got it (we discovered it accidentally when we had the whole family tested).For the most part it need not be life threatening, as long as you stay away from any Sulphas, Barbiturates and Pentathols. We have this little rhyme memorized, and whenever we get to a doctor it gets repeated, as well as on permission slips for the kids.Just shout if you need more info, we've come a long way with PV. Quote Link to comment Share on other sites More sharing options...
ivory Posted January 5, 2007 Author Report Share Posted January 5, 2007 Hi Hendie thanks for the reply, with both of you being porph does that mean all your children will have it and where you dxed is SA. My cousin on my mothers side died of a heart attack from the porph and before we knew about it my brother died after surgery ( his throat closed). Until I knew what it was I had about 260 attacks in 5 years this last year has been good using ativan and watching the diet but I find the sun does me in.Dec and Jan are my worst months. Are you on the heme arganate. Because its so rare here nobody does the tests properly ( left in the light and such) so we are all still waiting for a dx I worry about something happening to one of us and the docs accidentally killing us. My neuro says to keep testintg until we get a positive. I use the Cape Town site for all the info and if I could afford it I'd go back for the tests. Do you find the food the biggest problem all the sulphites and chemicals,I think the strangest thing about this disease is taking all that time before the attacks not knowing what was around the corner. keep well and any Ideas you have would be greatly accepted. ( I have french and German but I know this came from my mothers mother. Sharon from Oz Quote Link to comment Share on other sites More sharing options...
Dedrei Posted January 5, 2007 Report Share Posted January 5, 2007 Is dit net ek of het ander mense ook nie 'n idee waarvan hulle praat nie Wat is die siekte "Veriagate Porphyria" en hoe weet jy jy het dit en wat doen dit aan jou? Quote Link to comment Share on other sites More sharing options...
Mara Posted January 5, 2007 Report Share Posted January 5, 2007 Hi DedreiI was also interested and did a google, these are the most informative links that I came across.http://ghr.nlm.nih.gov/condition=porphyria...0EFE13A424BAFD0http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=176200http://www.porphyria.org.uk/acute_facts.htm Quote Link to comment Share on other sites More sharing options...
Nilo Posted June 12, 2007 Report Share Posted June 12, 2007 Hello allWe also have Porphyria in our family, my grandmother and two uncles have it but my father did not and as far as I know neither do I or my children. I do however always put ? Porphyria and any Dr's form and hospital admission and have never had any problems. I know that there are various forms of porphyria and the one we have stops the red blood sells from "collecting" oxygen.It runs in families so we are all related in some or other way.Nilo Quote Link to comment Share on other sites More sharing options...
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