I am one of few people in the world to have Hyperoxalruia II AMA!

Is that a lack of paragraphs?

^;)

Don't tell anyone and they won't suspect anything.

I appreciate your effort to communicate about yourself and the disease. Your article is interesting and informative. Here come my questions:

• Is it possible to devise a completely oxalate-free diet? If yes, is it effective and sustainable?
• Is gene therapy possible?
• Are there any correlations between this disease and gut flora?
• Who/what inspires you in life?

Thank for taking time to do this AMA.

To answer your first question, it would not be effective to have an oxalate free died, because oxalate can be biosynthesid in your body from several precursors including vitamin C which upon degradation gives oxalate.

oxalate free died

RIP

Let us all bow our heads in a moment of silence.

1 second passes

So, who wants tacos?

Me

do you own a spork?

Honestly never thought about it. If I tape a fork to a spoon will it count?

Hi wcasap..What sort of foods have high levels of oxilates? Do you have pain or illness daily, or do you mostly feel ok except when crystals form wherever they do? Do you have to drink a lot and therefore pee a lot (because username)?

Some food I haven't touched in awhile are Spinach (yes!) these have lots of oxilates, also kiwis, beans, the list goes on. I don't feel pain from the disease, but the pills I take are such high doses it hurts. 600MG of B6 causes some nasty nausea and migraines. Drinking water is very important for me, and yes I do go to the bathroom frequently haha. Thanks for reading and asking!

Hey! Kudos to you for being so spunky and real in your writing. My question is how has this disease changed your outlook on life. Also one more. Did you ever like curse at a higher power or whatever and ask yourself "why me?", like why did I have to be the one with this fucking disease? Thanks and you're legit awesome :)

Thanks for asking! It really means a lot, and yeah, sometimes you're like why do I have this? But when I turn 18 I'm buying some lotto tickets. 1 in 100mil chance? This better work the same with good luck. But in all seriousness, it's pretty tough sometimes, but I have my family with me and that's all I need. And taking chances in life is easier when you have an impending doom chasing you. I really appreciate you asking, and you're awesome too!

Hi wcasap, your post has been removed because:

Your post has been removed because it lacks adequate proof.

Unfortunately, the links or photos you've posted could have been posted by anyone, and they don't prove that you are the person doing the AMA. Your proof needs to be something that connects the fact that you're doing an AMA with your identity. This could be something like a photo of you showing what you're doing the AMA about with a sign that has your username and the date. It could also be documents (partially redacted if desired) with a note that has the username and the date.

Here's a link to the section of our wiki that discusses proof.

Please let us know when the proof has been added by replying here and we'll put the post back up. Cheers!

Please contact the mods if you need further assistance

Added a picture of me holding a sign of my username and the date. Located under Edit 3.

I don't want to sound like a dick but don't you mean hyperoxaluria ? :;((

I don't even know, there's a's o's everywhere, sorry about that!

You sound pretty zany. Do you write crappy sitcoms?

I've got a pilot going, wanna be in it?

I like your writing style! How old were you when you were diagnosed? How is your kidney function currently? All the best to you!

Thank you very much! I was about 9yrs when I was diagnosed. Also, my kidneys are working to the best of my ability! I get roundly testing every six months with EKG's for my heart, Ultrasounds to look at my kidney/liver, and blood tests! (I hate needles.) From my last testing 3 weeks ago, I'm looking fine! Small amount of damage but nothing to worry about.

Hey great post!

I hope yr feeling okay today, we're all rooting for you buddy!

My question: has having this disease changed your outlook on life in a noticable way from your peers? You don't need to answer if it's too perspnal; but has it made you reckless, careless, etc? Really curious.

Thanks a bunch!!

Thank you! It really means a lot, I haven't made crazy decisions, but sometimes you think about it in a major situation and it gives you an extra push.

How do you feel about those people opposed to organ donation from the thread the other day?

Got a message for them?

Sucks that people who get off scot-free in life don't help others. I mean I'm not going to down talk them or threaten them, it's just sad. Thanks for responding!

What is the most significant thing you wish you could do, but can't because of the disease?

Is there any question you hoped to see here? Something you want us to ask?

I just want a goddamn kiwi. And no, the questions I get I love, thanks for reading and asking!

I wonder if maybe this false-positive will get the fascist robots in charge of this /r/ from deleting my comment?

I don't have any questions, but I want to thank you for your awesome writing style. (Yes, I would vote for paragraph breaks, but that's a minor gripe for me.)

Usually people who do personal/medical AMAs just assume everyone will Google the disease, but I can tell you from personal experience I usually don't bother. (Thank you for not judging me.) So the fact that you provide medical information is awesome.

But then you also provided humorous asides, gave specific personal experiences, and wrote the intro in an engaging, fun style -- I'm just very happy to see such quality writing here.

I'm a HS English teacher, and yes it's frustrating to see my students using the "wall of text" approach with no paragraph breaks. But I'm much more frustrated when their prose is lifeless and devoid of humor or personality. So kudos to you for making me smile with your words.

Thank you so much! I've always enjoyed writing and hate MLA (sorry about that) but it's fun to be creative. As a speaker of students, let them creatively write, it gets the brain going and they are bound to write better. Also make a vocab test question about me! I'd love to see that! Thank you!

How do they get up there?

ladders

They've been playing Donkey Kong

What does your day to day diet consist of?

No dairy, no nuts, no fish, simple things I guess. Normal dinners and breakfasts, avoiding food with high oxalates. Thanks for asking!

Wow, my condolences. What sort of pain medications do you currently take?

Have you considered cannabis to ease the pain? I work with many medical patients who have switched from taking horrendous pain pills daily to vaporizing CBD rich herbs to ease the pain and provide sedation (while skipping all those nasty side-effects of the prescription medications)

Moreover, have you considered reaching out to IBM's Watson program? They have been working on methods of applying the Watson AI to cure rare genetic diseases like yours.

Never give up hope! Medical technology is advancing at a rapid rate. I think things are going to change dramatically in the healthcare industry within the next 15-30 years

Pain isn't a problem, the only pain I experience are from the pills I take and also kidney stones. Thanks for the hope! I'll see if I can contact them to see if there is an option. thanks for asking!

Hi! It's very nice to read your story. I was wondering if you/your parents ever saw a genetic counselor and what that experience was like for you/them? Also, do you think you'll have children? And if so, would you want your spouse to get tested to see if they happen to carry the trait (even though it's incredibly rare)?

Then for fun: what is the best book you've read at this point in your life? If you're not into books, favorite movie you've watched? Thanks for doing the AMA! I hope you continue to not need a liver transplant for a while!

Thanks for asking! Children would probably lead to adoption, avoiding carrying on this disease would be nice. Best book? Jeez there are so many, Percy Jackson is a great one, my favorite writer is Aaron Sorkin, his shows are amazing. Thanks for taking the time!