Variegate Porphyria

skygnome777 · Post by **skygnome777** » Tue Jun 02, 2009 3:20 pm

Are there any burners who have this metabolic condition?
Any advice for a prospective burner with it?

I'm going to bring glucose tablets and probably have a bottle with some sugar water alongside my water bottle at all times. I also intend to keep myself like a basted turkey covered in bullfrog sunblock.

Any other suggestions?

oneeyeddick · Post by **oneeyeddick** » Tue Jun 02, 2009 3:31 pm

Get a liver transplant before you go ?

Token · Post by **Token** » Tue Jun 02, 2009 9:18 pm

Under Armour form fitting jersey, long sleve in white; they make one specifically for high heat environments and they are excelent on playa if you need to protect your skin.

Make sure you have a ID bracelet that lists your condition just in case.

Contact the burningman medical staff via email and ask them if they have any advice.

Talk to your doctor and explain the environment.

Instruct campmates on what you symptoms may be so they can recognize them.

Dave_techie · Post by **Dave_techie** » Wed Jun 03, 2009 9:31 pm

My doctor actually kinda laughed at first when I asked him if it was a good idea to go to burning man <epileptic> "that's not really a medical question" (priceless facial expression)

so you'll have to make sure your doctor knows you are serious.

theCryptofishist · Post by **theCryptofishist** » Thu Jun 04, 2009 7:05 pm

How many more people have to respond before I can start making vampire jokes?

Simon of the Playa · Post by **Simon of the Playa** » Mon Jun 08, 2009 2:00 pm

you know damn well there is no natural sunlight that ever penetrates the sactum sanctorum at your local Hot Topic.

try vacationing there, or join the crew at spikes.

skygnome777 · Post by **skygnome777** » Fri Jul 10, 2009 12:07 pm

theCryptofishist and Simon of the Playa
Haha
Well considering past the connection to Vampirism barely anyone has heard of Variegate Porphyria vampire jokes are okay starting now.

However, some people are actually offended by that connection. I think it was ER that had an episode where someone with porphyria snuck some blood to drink and a lot of people with the condition were offended.

For some reason that connection just amuses me.

Hey let me rest in peace!

Dave_techie
A discussion with my doctor about it will likely get the same reaction.

Token
Thanks
If under armour breathes well then I'll have to consider that.
But there will be a balance between overheating and blocking the sun.

oneeyeddick
I would but, my budget for burningman is too small.

theCryptofishist · Post by **theCryptofishist** » Fri Jul 10, 2009 9:15 pm

Well, I suppose you can always reply with a note about George the III and Mary, Queen of Scots. Kicking the peasents alwyas works.
I think one reason that I remember the vampire stuff is that that hit the papers within a year of Wade Davis telling us that zombies were real, too. A twofer just has more sticking power.

Then there was that episode of Divorce Court where he was a vampire and wouldn't go out in the day and then they discovered it was porfiria and reconciled.

ygmir · Post by **ygmir** » Sat Jul 11, 2009 7:00 am

theCryptofishist wrote:How many more people have to respond before I can start making vampire jokes?

interesting, ironic,,,,,,,,,you be the judge.........

skygnome777 · Post by **skygnome777** » Sat Jul 11, 2009 4:33 pm

[quote="theCryptofishist"]

[size=7]Then there was that episode of Divorce Court where he was a vampire and wouldn't go out in the day and then they discovered it was porfiria and reconciled. [/size][/quote]

That guy had a different kind than mine.

Variegate Porphyria doesn't have to be that bad. It needs environmental factors for someone to even know they have it. I was only checked for it because my Mom was disabled by it. But she was on a whole bunch of antibiotics bad for it for years. Thus far my symptoms haven't been anything more than annoyances that are easily avoided. Just the desert provides a unique opportunity to mess with me. :-)

But I'll just up the regular precautions and probably get myself a bracelet or something. Really I'm more worried about having a crummy time than being in any actual danger.

theCryptofishist · Post by **theCryptofishist** » Sat Jul 11, 2009 8:52 pm

skygnome777 wrote:
theCryptofishist wrote:
Then there was that episode of Divorce Court where he was a vampire and wouldn't go out in the day and then they discovered it was porfiria and reconciled.
That guy had a different kind than mine.

Well, to a certain value of "had." This was 1980s Divorce Court. I think a lot of it was faked.

apollometeor · Post by **apollometeor** » Thu Jul 16, 2009 9:25 am

instead of under armor try a morrocan robe (djellaba). its sandard dress there for me and women. full body sun protection and the breeze blows right through it. It also looks a lot cooler than wearing a corporatly branded t shirt.

Token · Post by **Token** » Thu Jul 16, 2009 10:02 am

Where can you get an authentic Djellaba?

skygnome777 · Post by **skygnome777** » Thu Jul 16, 2009 10:07 am

A problem with the process is I'm not expecting to ever to make it to Burning Man again. My currently delayed life plan doesn't leave too much free time.
I'm trying to not buy too many things I wont likely use again.
I thought about just buying some white sheet material and seeing how to sew it together like a rob. But I know I'd never get around to making it.

apollometeor · Post by **apollometeor** » Thu Jul 16, 2009 10:30 am

[quote="Token"]Where can you get an authentic Djellaba?[/quote]
in morocco of course or there are probably a few "import" stores around LA or you can make one the patern is very simple

Token · Post by **Token** » Thu Jul 16, 2009 11:55 am

Thanks.

I'll see if Santee street has a morrocan merchant. If not, pattern it is.

Variegate Porphyria

Variegate Porphyria

keepn the sun off