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What Is Cystinuria?
An inherited, genetic, present from birth disease that produces painful, lifelong cystine kidney stones as the main symptom.

How Many People Are Born with Cystinuria?
Approximately 10,000 worldwide, about 1,300 men and 700 women.

Do Men or Women Suffer More Severely from the Disease?
Undeterminable. Depends on the individual. Though, for obvious reasons, men are said to suffer more.

Do Adults or Children Suffer More Severely from the Disease?
Undeterminable. While most children don't have the condition as severely, stones crushing a tiny body would be the worst.

Who Discovered and Named Cystinuria?
Dr. William Hyde Wollaston of England in the 1800's, and his collegues.

What are the stones made of?
Cystine, an otherwise essential amino acid.

What color are the stones?
Straw or light yellow, medium yellow, or medium to dark orange, often resemble a piece of sulfur.

How hard are the stones?
Cystine stones are the hardest in composition of any known kidney stone.

How rare are they?
They are one of the rarest types of kidney stones.

How big are the stones?
Anywhere from invisible (nearly liquid) to gratefruit size or bigger. Most fall between these two extremes.

Are there various levels of severity of symptoms?
Yes. This may be due to the inborn nature of the disease (pre determined) or successful external therapies.

Do a patient's parents have the disease?
Not usually, at least not as severely.

Can the disease hide in or skip thru many generations before showing up again?
Yes.

Is there any way to know if you will pass the disease along to your own children?
Yes, testing for both partners, if both carry Cystinuria or the gene for (very rare), then you definitely will.

Is there any way to prevent passing it along?
No, unless you have children with another partner who is healthy.

How will pregnancy or fertility be affected?
Pregnancy itself may proceed as normal, tho stone medications may interfere with it's viability. (conception, misscarriage, etc). As a result of additional cystine, sulfur, and stress, a woman may ovulate more than usual.

What race is it most prevalent in?
Whites, northern Europeans, Medditeranian peoples. Presently, those living in the US, UK, Australia, Canada, and the British Isles are most affected.

Is there any cure at present?
No, not completely.

What is equal to or worse than the worse stone pain?
Not much. Broken bone, bullet thru heart, stabbing, animal attack, etc etc.

Is it possible to go thru life as a cystine patient with little or no pain and few stones?
Yes.

Is it possible to go thru life with chronic pain and chronic stones?
Yes.

What pattern can you expect as a patient?
It usually falls somehwere in the middle. Many cases are severe or get progressively worse. It's possible for one patient to experience all levels due to fluctuation, over a lifetime.

Are cystine and cysteine the same thing?
No, there is a little difference.

Can you die from Cystinuria?
No, not directly. Rarely, kidney exhaustion/failure may present itself at the end of your life.

How is Cystinuria formally diagnosed?
By testing a stone for cystine in a lab. Or by taking a urine collection and testing for cystine and its related chemicals.

Can the disease be eased by removing an offending kidney?
No, unless the kidney is totally far gone. Even then it won't cure you.

Do both kidney make the stones?
Sometimes. Sometimes it is only one in a lifetime.

Will medical procedures like surgeries help?
They will take away the stones or symptoms temporarily, but not the disease.

What medications can you take for lowering cystine?
About 2 or 3 are on the medical (not herbal) market.

How much can the disease be helped?
It varies extremely.

Can dietary changes help?
Possibly.

Can people with this disease work, go to school, or live a completely normal life?
Not always, at least at certain times.

What's the best thing you can do for this disease outside of medical/diet therapies?
Know Jesus Christ. Prayer. Lots of rest. Lots of monitoring. Disease Awareness. Slower Paced Lifestyle. Lots of Love from Family and Friends.