Cystinuria (NORD)

Рет қаралды 12,746

Жыл бұрын

Cystinuria is an inherited metabolic disorder named because of high levels of the amino acid cystine found in urine.
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Пікірлер: 18

@qienna6677 Жыл бұрын

As someone with Cystinuria, I enjoyed this video, but it would have been good to also point out that the experience can vary and as our bodies produce cystine regardless of what we eat reducing or eliminating animal protein has varied success. Successful prevention also varies depending on what country a person is in and what resources they have access to.

@user-bv9og7ii2z 11 ай бұрын

I have this disease. Is there a way to get treatment? For information, I live in an Arab country

@qienna6677 11 ай бұрын

@@user-bv9og7ii2z There's no treatment guarunteed to fix it, it seems to vary from person to person. The best person to talk to about treatment would be a nephrologist or a urologist. Some people see results going vegetarian, otherwise best advice is drink at least 3.5 litres of water per day and take a urinary alkalinizer such as potassium citrate. You'll get good advice if you join up with the International Cystinuria Foundation, they're really useful.

@omedaubed 2 ай бұрын

@@user-bv9og7ii2zHi dear my son have cysteine my i contact you im from Iraq

@StangGirlRacing 12 күн бұрын

Great laymans term explanation for family & friends. Unfortunately I have this disease & have had 69 surgeries to remove stones since 1999. 36 of those 69 were percutaneous procedures, the rest went up the “natural route”. Good times.