APF Links And Other Stuff

There are a ton of links out there and articles leading back to the APF website and you may wonder why I don't have them. If I tried to explain you would be turned off by the first few sentences but the bottom line is if you need the information it's easier to find than my blog and if you ask I will direct you there. If you are denied help there do not give up until you have been proven to not have Porphyria. If your levels aren't high enough for diagnosis be sure you are in attack when testing and there have been people turned away who did in fact have Porphyria but the tests were done too late to be conclusive. With some types the porphyrin levels go down within days. The sooner you are dx'd the better and the less chance of developing peripheral neuropathy. Many stories out there about people who were tested many times before they fially got a positive test. There is huge controversy over what a "positive" test is. If you have a positive PBG you have to assume the life of a Porph until you can confirm you do not have it. A temporary dx won't kill you but an undiagnosed attack can. Avoidance of triggers is all that's needed until you are sure.

You may have seen a show on TV recently like CSI, House or Medical Mysteries where the patient was diagnosed with Porphyria. Most people will watch those shows and say "oh I don't have that" when in reality those shows take the worst cases and sensationalize them. If you have mysterious abdominal pains that cannot be explained by a doctor along with a checklist of various symptoms that may or may not manifest every time you have a possibility of having Porphyria especially if there is family history of the same unexplained symptoms. While it can affect you mentally it doesn't always and the most common mental symptom is depression. Sometimes it manifests as what we call a "fog" where you just aren't "with it" and get confused easily. I personally have trouble with my breathing and temporary incontinence because my muscles get weak. And the feeling of being wired... you are exhausted but just can't seem to get to sleep. That's when I start to carb load. Carbs don't have to be tons of sugars and cakes, it can be a baked potato or other complex carbs and most guidelines say you should eat carbs every three hours. Many people have to watch what they eat but aside from sulphites and MSG I've been pretty lucky. I don't take any prescriptions which I believe is why I'm able to tolerate more than alot of people as far as triggers. There is a long list of triggers and someone should avoid as many of them as possible but still live as normal a life as you can.

Eighteen years ago I was diagnosed with Acute Intermittent Porphyria after a phone call from my mother saying it could be the reason behind my mysterious illnesses.Mom had been diagnosed and when they tested me I had it too. Testing is difficult and some doctors aren't willing to diagnose unless the test is in the exceedingly high numbers which can be fatal if the doctor dismisses the thought totally. All it takes is one trigger too many. This blog is to reveal the complications with not only diagnosing but the ongoing struggle to live a normal life. I didn't realise it but I do have reactions to the sun which isn't typical for AIP but over the years I've noticed alot of things that I took for granted as being normal.

Stories

Today I am very discouraged reading some of the stories about Porphyria on the net. I have Porphyria and I have many online friends in my support group so have heard many many stories but the ones posted in blogs just seem so extreme when it comes to certain things. I welcome people to post their own story and you can do it annonymously. Don't ask for money and don't link back to a website that asks for donations. Don't claim that even the light from the computer causes attacks if you are known to be a regular in an online support group.

Porphyria

Here I am minding my own business, trying to stay out of trouble and I get a Google Alert about Porphyria. Those alerts used to be rare but now it seems I get as many as I used to get spam. Most are about prescriptions with warnings to not take it if you have Porphyria. I guess that's good and not a bad thing. Prescriptions are pretty dangerous for us and one of the most common triggers for Porphyria. Nooooo that vampire story is a bunch of bunk. I don't know where it started but they sure did us a diservice by associating us with something that has nothing to do with the illness. No we aren't mad most of the time. Frustrated yes because it's really hard to find a good doctor that not only knows his stuff but treats you like a human being with feelings and a serious illness. It is serious, but only if we are triggered by something and the attack is neglected. If you have Porphyria and want to talk or if you just want to know more about it I'd be glad to talk.