FAQ - Hyperoxaluria
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how rare is primary hyperoxaluria?

could you please give me the statistics but fairly simple in 14 :) thankyouu x

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will i still be able to dance with kidney disease?

im 14 and in the middle of being diagnosed with some sort of rare kidney disease, the one they have in mined is called primary hyperoxaluria... so will i still be able to dance,, proffecionally.. i usually dance 5 days a week for about 12 hours alltogether, dancing is my life.. but recently iv been to ill so i havent danced in about 2 months ?? so please, do you think ill be able to dance !!! (ballet, advanced modern and tap? thanx :/

There is a guy with kidney failure on dialysis who runs and train for triathlons - he's in amazing shape. If he can do that, perhaps you can dance.

I don't know anything about your disease - whether it leads to completely kidney failure or not, for example. It could be challenging to dance 12 hours day with kidney failure, but don't say "no" til you have more information. I would advise you to make sure you are following your doctor's advice, taking all the medicine on schedule, following any diet instructions you get, and always getting your required labwork done. I would think that dance would be good exercise and would help you both mentally and physically to deal with the disease.  (+ info)


:( i've just been told i may have kidney disease.. im 14 and they havent officially diagnosed me yet but they said its most likely an extreamly rare one called primary hyperoxaluria... im really scared and i have another appointment on monday but untill then i dont no, i was wondering ,, how is kidney disease treated ??? i no all the different kinds are treated differently but in general , how are they normally treated?? is it kimo??? i dont wanna loose my hair !! :'(

thankyou !

You said the docs told you that they thought it might be a very rare one. Primary Hyperoxaluria. I don't think they treat this with Chemotherapy like you are thinking where you loose your hair. Being scared is very understandable. I would be scared too. But the only reason you are scared is because you don't know what is going to happen. The problem with rare diseases is that you probably won't find anyone on here that has ever had any experience with this particular one, so I wouldn't let anyone scare me. The best thing to do is wait for the doctor to tell you. There is something you can be doing in preparation for that tho. Talk to your Mom & Dad and tell them that you are scared and why. They are scared too. Start making a list now of all your questions for the doctor and make sure and take your list with you to that appointment. Then every time you go to see that doctor, always write down your questions and take the list with you, so you don't forget to ask them. That helps your fear a bunch because many times you will think of questions when you aren't in that office, but forget to ask them when you are. Good luck, and remember...talk to your Mom & Dad. They are scared too.  (+ info)

what will the doctors do !? please help im really scared :/?

hello im 14 years old and have just found out i have something wrong with my kidneys, im hoping someone can help me understand what it is and how they may treat them while im waiting for the results,

this is what the doctors letter sais>>>>i have a rare metabolic disorder and " severe bacterial nephocalcinosis in both kidneys" . it also sais primary hyperoxaluria is the most likely problem..

please help me, explain in simple terms what it is and what they will / may do to treat it,, medication ect.. do you think ill have to go on dialysis ?? :S

thank you :) x
fanx for the advice david,,, i cant "ask them " if i dont have an apointment and the reason im asking on here is mb someone can explain to me in easy terms coz the doctors cant,, i dont want pathetic answers thankyou -_-
thankyou tiff.. they have gotten too big, blocked my tubes and had to have 3 operations to get the loose stones removed,, but thanks for a decent answer :) X

See, This irritates me as any half decent doctor would have explained it instead of giving you a bunch of medical words and a basket of stress.

Anyways... Basically, Bacterial nephrocalinosis is a condition where calcium builds up in your kidneys, creating kidney stones.

Primary hyperoxaluria is what caused it, it raised the calcium levels in your kidneys.

As to treatment and such...
Its usually treated by medication. Surgery may be nessessary if the stones get too big. But most likely they havent.

if you want, go have a look at the sites I referenced, but dont expect to understand much. I'm a second year health student and I had to pull my medical dictionary out :)

Stop stressing, go speak to the doctor, he/she can proabably explain it better and has more training than me :)  (+ info)


im 14 years old and in the middle of being diagnosed with some kind of kidney disease/problem.,, its most probably a metabolic disorder,soo , how serious is kidney disese? the docs said the 1 they have in mined is primary hyperoxaluria or something. is this a kidney disease or a kidney disorder? or is that the same thing ? lol, sorry,, but im really scared and i will ask the doctors all thease questions on tuesday but befor then i just want answers so please help ? thankyou! :D

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can you please tell me what this doctors report means ! im 14 ?

hello , im a 14 year old girl that is EXTREAMLY confused !!! here's the doctors letter, ill just right the important bits ;)

ella has severe balateral nephocalcnosis but this dosent alone explain her loin pain. i am anxious that she may have renal pelvic fragment or a stone that has dropped into her uretere. i am very confident that she has an underlying metabolic disorder, with primary hyperoxaluria as the most likely problem...........

since the letter was written i spent 2 weeks in hospital and had 2 operations to remove some stones the doctor said to my mum that while doing the opp it didnt look quite as bad as the scan showed, but still bad... in another part of the letter it said i have sever nephocalcnosis in the right and moderate nephocalcnosis in the left

i am waiting another appointment which i think is monday but until then i want to no what dose this mean??? ,, im scared. also is this rare or common ?

thankyou for your time and i WILL pick a best answer ;D xx

you have been diagnosed with a metabolic condition which causes deposition and precipitation of calcium oxalate in your urine passages and they keep building up and forming stones which block your urine flow and cause for you the pain in your sides and back  (+ info)


hello, im 14 and in the middle of being diagnose with some sort of kidney problem... the docs have said that its a metabolic disorder that i've probally had all my life, , , i was wondering, would this be counted as a kidney disease ? the only name the've given me is primary hyperoxaluria, but thats juat a maby so im not saying it is that.. so yeah, would a kidney problem like this, not nessecerily primary hyperoxaluria , but any disorder like that be classed a kidney disease ? Thankyou ! =) X

If it's hyperoxaluria, it's classified a hereditary disorder but yes, it is a "disease" process affecting the kidney's.  (+ info)

AGRHHH,, what could it be now ! kidney problems :/?

hi, im 14 and im kinda in the middle of being diagnose with kidney problems/disease, so sorry if this is long,

right, so i always used to get blood in my wee,, about 2 times a year for a week long for as long as i can remember,, i didn't tell anyone when i was 8 or 9 because i thought it was normal and thought it was ribena,, lol ! cut a long story as short as i can, they are now doing loads of tests on me because i have severe calcified kidneys and lots of stones in my kidneys, but most of the stones are stuck to the tissue of my kidney and cannot be removed,,

so the only name they've given me so far is primary hyperoxaluria, which i no is extreamly rare,, but you need to have a high amount of oxalate in the urine to have this condition,, and they said i don't ( in the sample i gave them ) So i probably don't have it,, they did say i have a higher amount od calcium in my urine than the average person though,, so my question is,, what kidney disease `( something simalar to hyperoxaluria) had normal oxalate but high calcium ??

also,, is calcification of the kidneys counted as kidney damage and if so, can you cure it ?????

sorry this was long, THANK YOU ! ! x
oh and also i had 2 operations to get rid of some stones 3 weeks ago,, they got rid of the 3 stones in my kidney tube things and a few loose ones from my kidneys ,, my right kidney is classed as severe and my left is moderate :)

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hello,sorry this is a repost but i dont think i made it clear firstly,

im 14 and in the middle of being diagnose with some sort of kidney problem... the docs have said that its a metabolic disorder that i've probally had all my life, , , i was wondering, would this be counted as a kidney disease ? the only name the've given me is primary hyperoxaluria, which is apparently really rare but thats juat a mabey so im not saying it is that,, i do no that it is something that is causing severe calcification in both kidneys and also causes stones as i have already had 2 operations to remove stones blocking my tubed in the past 4 weeks or so

.. so yeah, would a kidney problem like this, not nessecerily primary hyperoxaluria , but any disorder like that be classed a kidney disease ? Thankyou ! =) X

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how bad is kidney disease ?!?

hello, im a 14 year old female and the doctors think i may have kidney disease, they havent actually diagnosed me yet but im waiting fot the results or the stone analysis, if i have it , the most likely one is extreamly rare, its called primary hyperoxaluria. i was just wondering, how bad is kidney disease ,, generally. i dont want you to say "omg its so bad youll probally be dead by 20 " i just want experiences of people and family members of people with kidney disease,, oh and dont bother answering if your gonna say ask your doctor,, im just scared = / x


My dad had kidney stones. They can be bad, but if you get it in time, you'll be okay. Any disease that anyone has can be treatable if you catch it in time. I'm not saying how bad it is, cuz I don't know your pain, but that's all I can say.  (+ info)

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