My porphyria blog: Porphyria and Heavy Metal

Porphyria and Heavy Metal

It's been quite a while since I've done a new post here on my blog. I'm still battling my aip attacks and my mother and I had started building a new house, but it all fell through. Unfortunately I've had to fight in court and everything is still going on. Despite it all I'm trying to stay positive because stress is a trigger for my aip attacks. I've gotten a lot of great comments from you all and I thank you for them. I really enjoy reading them all. I've also gotten some requests for some new posts, so I've finally had some time and I decided to write this post about Porphyria and Heavy Metal. I'm talking about real heavy metals that we sometimes come in contact with in our everyday lives. Not the Heavy Metal Rock Band PORPHYRIA-:) I don't blame them for using the name porphyria, it does sound cool after all-"POR FEAR RIA". Am I right? I've decided to write about this link between porphyria and heavy metal because I've learned a few things recently about what can cause porphyria to develop and become symptomatic. The question I had in mind is "How do you get porphyria?", because whenever I hear about a rare disease I'm like everybody else, I ask myself "How do you get it?"- So I then know how to avoid getting it. After I was diagnosed with aip, I assumed that Porphyria is a genetic disorder, that the only way to get it is through one of your parents, meaning they pass the gene defect to one of their children. The porphyria ratio is 50/50, meaning if one of your parents have porphyria(even if they don't know they have it)then there is a 50/50 chance that they will pass it on to their children, at every birth it's 50/50, but don't let this scare you! Porpyria is a rare disorder and it's not always symptomatic when you do have it, because it has to be genetically triggered. So I wasn't aware that you could get aip without having the gene defect. I was surprised to learn this recently. I was doing some research and read a story about a young woman who was diagnosed with aip and had debilitating attacks. She took the genetic test for aip and she did NOT have the gene defect, and until the test she had been living her life as if she did have genetic aip, not getting pregnant and avoiding aip triggers. After her genetic test was negative she began to search for the culprit to her aip attacks- she found out through some research that certain Heavy Metals can cause you to develop porphyria. She looked back into her history for exposure to any of these heavy metals, and guess what? She had been a dental hygenist and had been exposed to the mercury in the fillings! Mercury and Asbetos exposure can literally cause you to develop acute porphyria whether you have the gene defect or not. In addition lead poisioning can mimic aip symptoms almost exactly! (So this answers another question I get a lot- "What else could cause aip symptoms besides aip?") In addition the Agent Orange our veterans were exposed to have caused some of them to develop aip symptoms, some are now realizing they HAVE developed aip as a result of this exposure. I have been tested for heavy metals and I wasn't exposed, but if you suspect you might have porphyria or porphyria symptoms, then get tested for lead and mercury poisoning, so they can be ruled out or in. And if you've been exposed to asbestos then watch out for these aip symptoms as well.

3 comments:

Anonymous said...

Penelope,
Thank you so much for your very helpful blog!! I have been doing some research into heavy metal exposure and porphyria as one of my family members was recently diagnosed with porphyria and is in the dental profession. I would love to read about or possibly contact the dental hygienist you wrote about in this blog post. Thank you so much for any help you can provide. Thank you again and many blessing!!

kkshya biswas said...

Hi, thanks for your kind blog.It is so follow able.
I have read the blog and I will follow your blogging idea.
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