Find fields & stores near you!
Find fields and stores
Zipcode
PbNation News
PbNation News
Community Focus
Community Focus

Reply
 
Thread Tools
Old 07-15-2011, 08:04 PM #1
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Ballers with Porphyria.

I have started this club to gather ballers with any form of Porphyria. Besides members of my family, I have only met one other person in my life who has the disease, and she was a paintballer from canada.

As it is such a rare disease studies, general funding and research are all pretty much coming from the pockets of the people who are either diagnosed with one of the forms of the disease, or the board members for the Porphyrian foundation.


General Meaning from Wikipedia
Quote:
Porphyrias are a group of inherited or acquired disorders of certain enzymes in the heme bio-synthetic pathway (also called porphyrin pathway). They are broadly classified as acute (hepatic) porphyrias and cutaneous (erythropoietic) porphyrias, based on the site of the overproduction and accumulation of the porphyrins (or their chemical precursors). They manifest with either neurological complications or skin problems (or occasionally both). A clinically induced and histologically identical condition is called pseudoporphyria. Pseudoporphyria is characterized by normal serum and urine porphyrin levels.
The term derives from the Greek πορφύρα, porphyria, meaning "purple pigment". The name is likely to have been a reference to the purple discolouration of feces and urine in patients during an attack.[1] Although original descriptions are attributed to Hippocrates, the disease was first explained biochemically by Felix Hoppe-Seyler in 1871,[2] and acute porphyrias were described by the Dutch physician Barend Stokvis in 1889.[1][3]
The prevalence of all types of porphyria taken together has been estimated to be approximately 1 in 25,000 in the United States.[4] The worldwide prevalence has been estimated to be somewhere between 1 in 500 to 1 in 50,000 people.[5]


I currently doubt there are many others on PbNation who have it, but it would be great to try to find any of them if they are indeed here!

Council
The_Leech (Acute Intermittent Porphyria)

Members(with Porphyria)

Other Members(Hanging out or have family/friends with Porphyria.)
ishootyourface96
imhereforst(Cousin has Porphyria. Strain Unconfirmed.)
Sitting Duck DE
akward silence
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS

Last edited by The_Leech : 07-21-2011 at 02:13 PM.
The_Leech is online now   Reply With Quote
Old Sponsored Links Remove Advertisement
Advertisement
Old 07-15-2011, 08:23 PM #2
ishootyourface96
 
 
ishootyourface96's Avatar
 
Join Date: Feb 2010
Location: Tampa, Florida
ishootyourface96 plays in the PSP
ishootyourface96 owns a Planet Eclipse Geo
ishootyourface96 has achieved Level 1 in PbNation Pursuit
ishootyourface96 has perfected Level 1 in PbNation Pursuit
if its so rare then how are u gonna get enough people to join? Or do u not have to have porphyria to join?
__________________
Nice Gear
RL
ishootyourface96 is offline   Reply With Quote
Old 07-15-2011, 08:49 PM #3
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
I'm just looking to try to connect with other ballers who may have it. Just like the ballers with asthma thread( even though asthma is much more common.)

If you know someone in the family, feel free to post up, or hang out.

-----Everyone is welcome to discuss the disease!-----
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-15-2011, 08:55 PM #4
ishootyourface96
 
 
ishootyourface96's Avatar
 
Join Date: Feb 2010
Location: Tampa, Florida
ishootyourface96 plays in the PSP
ishootyourface96 owns a Planet Eclipse Geo
ishootyourface96 has achieved Level 1 in PbNation Pursuit
ishootyourface96 has perfected Level 1 in PbNation Pursuit
is it pronounced por-free-a
__________________
Nice Gear
RL
ishootyourface96 is offline   Reply With Quote
Old 07-15-2011, 09:00 PM #5
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
No. Poor-fear-ia.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-15-2011, 09:25 PM #6
ishootyourface96
 
 
ishootyourface96's Avatar
 
Join Date: Feb 2010
Location: Tampa, Florida
ishootyourface96 plays in the PSP
ishootyourface96 owns a Planet Eclipse Geo
ishootyourface96 has achieved Level 1 in PbNation Pursuit
ishootyourface96 has perfected Level 1 in PbNation Pursuit
ah
__________________
Nice Gear
RL
ishootyourface96 is offline   Reply With Quote
Old 07-15-2011, 11:21 PM #7
imhereforst
 
 
imhereforst's Avatar
 
Join Date: Jun 2011
one of my cousins was just diagnosed your a strong guy leech
imhereforst is offline   Reply With Quote
Old 07-15-2011, 11:51 PM #8
Sitting Duck DE
A Shrubbery!
 
Sitting Duck DE's Avatar
 
Join Date: Feb 2009
Location: SLC, UT
Sitting Duck DE owns a Planet Eclipse Ego
Da leech isn't just a strong guy, he's an amazing guy.

you heading to UWL nebraska, buddy?
__________________
Shoot straight, talk straight, play straight, or go get bent.
Member since 2005, Team Desert Edge

Proudly sponsored by: Planet Eclipse GI Milsim
Ninja Paintball Lapco Paintball Gateway
Saints Paintball
Sitting Duck DE is offline   Reply With Quote
Old 07-16-2011, 12:22 AM #9
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Sadly I did not get off as requested, bud.

Thanks for joining the discussion, hope you both will be regulars here.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-16-2011, 12:27 AM #10
ishootyourface96
 
 
ishootyourface96's Avatar
 
Join Date: Feb 2010
Location: Tampa, Florida
ishootyourface96 plays in the PSP
ishootyourface96 owns a Planet Eclipse Geo
ishootyourface96 has achieved Level 1 in PbNation Pursuit
ishootyourface96 has perfected Level 1 in PbNation Pursuit
how does it affect u everyday? like what do u have to do differently because of it? do u have to take meds or shots like diabetes? sorry if these are dumb questions but this is the first time I've ever heard of porphyria
__________________
Nice Gear
RL

Last edited by ishootyourface96 : 07-16-2011 at 12:37 AM.
ishootyourface96 is offline   Reply With Quote
Old 07-16-2011, 12:39 AM #11
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Don't worry about the questions, it's fine. A lot of people have never heard of it. I am fine with normal people not knowing about it, but i find it odd Pharmacists do! (yet Doctors don't...unless they are hematologists.)

Since there are MANY forms of Porphyria I am unsure what each of them do. I can tell you what I know about mine.
On a day to day basis, there is NOTHING we can do with medicine. Best things we can do for ourselves is to make sure we eat regularly. Any unknown bodily changes (puberty, menopause, excessive drug use, etc) can cause the disease to flair up.

If we need any form of help medically in extreme situations, luckily there has been a new form of treatment to us. It's called PanHematin. it is a partially synthetic, part organic drug made from human blood. Our bodies don't process our Hematin right, which help carry iron and such, which causes the porphyria. Luckily, Panhematin, helps us with that. It takes about 4 hours for it to be introduced to our bodies through infusion. It also has to be prepared right before use and can't see sunlight before use.

For a more personal experience, my mother is now the face of Panhematin and this video has been sent to doctors who want know more about the disease.
http://www.aiporphyria.com/living-wi...l-stories.html
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-16-2011, 12:54 AM #12
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Quote:
Originally Posted by imhereforst View Post
one of my cousins was just diagnosed your a strong guy leech
Also, make sure it wont trace back to one of your blood relatives before you. If it turns out your own grandpa has it, there's a chance you do too, along with one of your parents.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-16-2011, 11:36 AM #13
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Good morning, world.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-16-2011, 12:14 PM #14
akward silence
Deep Sea Diving
 
akward silence's Avatar
 
Join Date: Jun 2004
Location: Honolulu, HI
 has been a member for 10 years
akward silence is one of the top 100 posters on PbNation
akward silence is a top reviewer
Back off fags, leech is mine.
__________________
+14/-0
2014 Forester XT
2008 335i
OSTT GURU
akward silence is offline   Reply With Quote
Old 07-16-2011, 12:19 PM #15
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Forever yours.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-17-2011, 12:04 PM #16
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Good morning BWP. Though it's pretty much just me. I'm so alone.

Hahaa. I guess my hopes to find other people with it in the Nation of Pb may not come true.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-20-2011, 09:58 PM #17
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
Anyone is welcome to come post!
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-20-2011, 10:12 PM #18
akward silence
Deep Sea Diving
 
akward silence's Avatar
 
Join Date: Jun 2004
Location: Honolulu, HI
 has been a member for 10 years
akward silence is one of the top 100 posters on PbNation
akward silence is a top reviewer
I didn't read, is this genetic or what?
__________________
+14/-0
2014 Forester XT
2008 335i
OSTT GURU
akward silence is offline   Reply With Quote
Old 07-20-2011, 10:36 PM #19
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
It is indeed hereditary. My mother gave me it, her mother before her, and her farther before that.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Old 07-20-2011, 11:00 PM #20
akward silence
Deep Sea Diving
 
akward silence's Avatar
 
Join Date: Jun 2004
Location: Honolulu, HI
 has been a member for 10 years
akward silence is one of the top 100 posters on PbNation
akward silence is a top reviewer
Thats crazy. I had never even heard of it until you said something. Does it hurt?
__________________
+14/-0
2014 Forester XT
2008 335i
OSTT GURU
akward silence is offline   Reply With Quote
Old 07-20-2011, 11:02 PM #21
The_Leech
Tell me I'm pretty.
 
The_Leech's Avatar
 
Join Date: Sep 2006
Location: Chicago
The_Leech is playing at Living Legends VI
The_Leech plays in the APPA beginner division
The_Leech has achieved Level 2 in PbNation Pursuit
The_Leech supports Empire
It's known to come and go in waves, and yes it hurts. The acute pains to the stomach are enough to put someone out for awhile. My mother says hers are vastly worse than child birth.
__________________
THAT DAMN PENGUIN

JT IMPULSE AND HOSTILE ROGUE FT!
I support the CHICAGO HERETICS
The_Leech is online now   Reply With Quote
Reply


Thread Tools

Posting Rules
Forum Jump