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Old 07-20-2011, 11:05 PM #22
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Ouch. I take it there is no cure?
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Old 07-20-2011, 11:06 PM #23
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The only treatment is PanHematin, which helps stop the waves for a short time. The only "cure" is a liver transplant.
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Old 07-20-2011, 11:11 PM #24
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Interesting. I take it yours is pretty manageable?
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Old 07-20-2011, 11:14 PM #25
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Yes. Males have less issues overall then females. It really sets on when bodily change happens, which is not truly as often for males as it is females.

I've had some issues, including short term memory loss, fatigue and some of the pain. My mother has had the worse pain i've seen and delusions.
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Old 07-20-2011, 11:16 PM #26
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Once again, great to be male. Sorry to hear about your mom though.
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Old 07-20-2011, 11:19 PM #27
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It's quite alright, she manages.

I try to help take care of her when i can. She gets regular 8 hour infusions of the PanHematin.
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Old 07-20-2011, 11:49 PM #28
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I bet that gets expensive.
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Old 07-20-2011, 11:54 PM #29
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It is, considering pan hematin is synthesized with real human blood.
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Old 07-21-2011, 12:14 AM #30
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Holy ****. I'm really curious what one session costs.
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Old 07-24-2011, 08:49 PM #31
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One session costs 7 grand. You have to get a minimum of 4 each time. So this can cost over 20grand per month.
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Old 07-24-2011, 09:54 PM #32
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Holy crap, that's crazy.
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Old 07-24-2011, 10:46 PM #33
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Yeah. Thanfully my moms insurance has been really good with her on that. In the past year they have dealt out more then $120,0000 towards her treatments.
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Old 07-24-2011, 10:54 PM #34
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Damn. My insurance ate about $1,000 for my recent medicines. I paid $3 per prescription. Schwing!
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Old 07-24-2011, 10:56 PM #35
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Insurance is a curse and a blessing.

Anywhooo...yeah.
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Old 08-11-2011, 04:13 PM #36
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Insurance dropped my mother. She can't keep getting treatments.
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Old 09-02-2011, 07:47 AM #37
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Wow, insurance jerks.

I actually have never heard of this either. Is it recessive?

I admire that you dont let it bring you down
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Old 10-08-2011, 09:19 PM #38
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for this group. Keep strong SPARTAN!
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Old 10-09-2011, 12:36 AM #39
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Thanks Zeb, sadly this whole thing hasn't kept up as well as I hope. but anyone who has questions can ALWAYS ask.

CAUSE KNOWLEDGE IS POWER!
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Old 10-09-2011, 10:02 AM #40
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I would love to join, I do not know anyone with Pophyria but this is a great cause and club.
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Old 10-09-2011, 10:14 AM #41
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Quote:
Originally Posted by Paintball Aesthetics View Post
I would love to join, I do not know anyone with Pophyria but this is a great cause and club.
anyone can take part in the discussion here! The goal was for me to connect with anyone else who had the disease, but that didn't work, so now I made it more about sharing knowledge on it!

So if you have questions, fine sir, ask away!
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Old 10-09-2011, 10:27 AM #42
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i understand that it has to do with the liver and such but is the Panhematin treatment the equivalent to dialysis for someone with kidney problems
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