See below

[Alembra]

Interested to know how long this cystinuria support page been here. I might have stumbled on it before but recently got an email about it. I welcome anyone to join the International Cystinuria Foundation support page On FB. I believe we have over 1500 members. If not more. Also I believe the cystinuria.org website will be better managed and updated soon to follow. I am a Board member and hope to be more involved. I am curious. Is there someone managing this support page for cystinuria ?

[AFCWombles Administrator]

Hi there. The group has been going for a couple of years, but we are not a noisy bunch, so haven't been out there banging a drum. Great to have you join us. Please feel free to share your relationship with this condition. Also would be good to know whereabouts you are based

[Alembra in reply to AFCWombles]

Thx for replying ! I’m the mother of 3 cystinurics from PA. My kids dx at ages 2, 4 and 6 but I’ve been known to this rare process all my life helping care for my own mother who suffers as well. My mom was transplanted with my sisters kidney about 10 years ago due to renal failure from stone damage. Our journey with our kids short of insanity with two severe stone formers ... too many Stones surgeries, and hospitalizations to count. One in OR and one in ER at same time at a children’s hospital and my eldest had renal auto transplants in 2014. I’m a Registered nurse and like to say instrumental in helping advocate through the ICF ( I still sit in the Board of directors ) I am very glad to see other means of support going on for our community. Stay strong !

[AFCWombles Administrator in reply to Alembra]

Wish I had half of your strength! Wishing you and your family well