Contact with others :)

[K112]

Hello! My partner has cystinuria and I wanted to see if anyone wanted to chat if you have it/have someone you care for who has it. Just want to connect with others who understand!

[neilsss Administrator]

Hi - I would recommend attending the cystinuria patient days which are organised by Kay Thomas and Matt Bultitude from Guy’s. They are a great way not only to learn about the disease but to meet lots of patients and their families. The next one was due on 19th Sep but I’m not sure if Covid has affected it.

[Catty8 in reply to neilsss]

I am happy to chat if I can help in anyway x

[bertrussell]

Have a scroll through the replies on various topics all stone related. I have had cystinuria since age 11 am now 67 happy to pass on anything that has worked fir me over the years.

[gsweeneyICF]

You're all welcome to join the International Cystinuria Foundation facebook group. Just make sure you answer the questions when asking for entrance. It's a private group with about 1600 members now. Members are caregivers or stoners.

[MattBultitude Administrator]

Just to say I agree with neilsss about the patient days we have in the UK. Unfortunately we had to cancel the one planned for September 2020 and will have to wait until next year to decide when we can plan another one. As a couple of people have offered, I am sure there are several people on here who would be willing to chat with you. Good luck.