Welcome to Cystinuria Support - Cystinuria Support

Cystinuria Support

Welcome to Cystinuria Support

KayThomas profile image
KayThomasAdministrator
1 Reply

This is my first visit to Cystinuria Support. I am really excited by the opportunity of allowing people and families with the disease to contact each other, share stories and helpful advice. This will be a community of people who really understand what it is to live with the disease cystinuria day in and day out. This is a resource I know has been needed for sometime. I know that this community is a very special one and look forward to contributing where I can.

Written by
KayThomas profile image
KayThomas
Administrator
To view profiles and participate in discussions please or .
1 Reply
Jasper2019 profile image
Jasper2019

I passed my first cystine stone in 1978 but was not diagnosed with cystinuria until 1982 since when I have lived a relatively normal life thanks to the amazing care I have received from your team, the Royal Free, other London hospitals and Royal Berks Hospital. I have been monitored at least every six months over the past 37 years. Thank you.

Not what you're looking for?

You may also like...

Coping as a teenage stone owner

Hi, I am a parent of a 13 yr old cystinuria patient (diagnosed at 6-lots of stones) been stone free...

What dosage of R-Alpha Lipoic Acid is needed to prevent kidney stones?

Hello, Wondering whether anyone can help please. I am a Cystinuria patient, and am looking at...

Cystinuria medication

What medicine has worked best for cystine stones?

Support during lockdown

Good morning hive mind. I'd be interested to hear how people have sought and received support since...