Page 1 of 1 [ 8 posts ] 

dianthus
Veteran
Veteran

Joined: 25 Nov 2011
Gender: Female
Posts: 4,138

23 Mar 2016, 5:19 pm

Anyone here have porphyria?

Is there any known link between autism and porphyria?

If you have one of the hepatic porphyrias, would you mind talking with me a bit about your symptoms and how you got diagnosed? Same goes if you know someone who has it. Feel free to PM me if you don't want to post about it.



B19
Veteran
Veteran

User avatar

Joined: 11 Jan 2013
Gender: Female
Posts: 9,993
Location: New Zealand

23 Mar 2016, 6:24 pm

The famous example of misdiagnosis of someone with porphyria is George the Third, who was considered to be mad rather than sick. I have never encountered anyone who has been diagnosed with it, despite having read many hundreds of medical histories in the past, related to a job I had. So either it is very rare, or the diagnosis is missed because the symptoms of porphyria are considered to fit other heuristics, which might explain the possibility of porphyria being misdiagnosed as other more common conditions?

I know about 50 people on the spectrum personally, and so far as I know none of them have the condition.



momautism
Emu Egg
Emu Egg

Joined: 26 Mar 2018
Gender: Female
Posts: 3

26 Mar 2018, 1:40 pm

I was trying to PM you but maybe you don't accept private PM 'cause I had no success.

dianthus wrote:
Anyone here have porphyria?

Is there any known link between autism and porphyria?

If you have one of the hepatic porphyrias, would you mind talking with me a bit about your symptoms and how you got diagnosed? Same goes if you know someone who has it. Feel free to PM me if you don't want to post about it.



kraftiekortie
Veteran
Veteran

Joined: 4 Feb 2014
Gender: Male
Posts: 87,510
Location: Queens, NYC

26 Mar 2018, 1:42 pm

Dianthus has been gone from WrongPlanet about a year or so.



lostonearth35
Veteran
Veteran

User avatar

Joined: 5 Jan 2010
Age: 52
Gender: Female
Posts: 13,880
Location: On a planet where I don't belong.

26 Mar 2018, 1:47 pm

It seems like every weird illness I've never heard of before or even common ones have some connection to autism. :?



Ichinin
Veteran
Veteran

User avatar

Joined: 3 Apr 2009
Gender: Male
Posts: 3,653
Location: A cold place with lots of blondes.

26 Mar 2018, 4:33 pm

lostonearth35 wrote:
It seems like every weird illness I've never heard of before or even common ones have some connection to autism. :?


There is no connection just because some random person on the internet made a thread on WP about it. There is a correlation between Autism and Autoimmune disease (google it, i can't find the .gov site that the document was on).

Porphyria is not an autoimmune disease.


_________________
"It is far better to grasp the Universe as it really is than to persist in delusion, however satisfying and reassuring" (Carl Sagan)


B19
Veteran
Veteran

User avatar

Joined: 11 Jan 2013
Gender: Female
Posts: 9,993
Location: New Zealand

29 Apr 2018, 6:44 am

There are thousands of threads created over the long history of Wrong Planet. If porphyria was intrinsically connected to AS then we would have heard about it long before now, I think, and there would have been a number of threads/reports and discussions. The lack of these, and any research of a reliable nature, indicates to me that any correlation between these two issues is illusory.

I am (vaguely) aware that some of the more evidence resistant antivaxxers tried to link porphyrins to their anti vax beliefs. https://leftbrainrightbrain.co.uk/2007/ ... ism-again/



SaveFerris
Veteran
Veteran

User avatar

Joined: 3 Sep 2016
Gender: Male
Posts: 14,762
Location: UK

29 Apr 2018, 7:01 am

It sounds like a rare combo that you'd be better off researching on a Porphyria forum


_________________
R Tape loading error, 0:1

Hypocrisy is the greatest luxury. Raise the double standard