Cystinuria support and resources?

[MattBultitude]

Hi all.

We are involved in a group discussing support for patients (or carers) with cystinuria and rare stones. We would be interesting to hear from you about experiences and opinions on this. Specifically:

1) Where you turned to previously and now when you have questions and how easy it is to find what you are looking for.

2) Have you encountered lots of misinformation or conflicting advice?

Thanks and look forward to hearing your views.

Matthew Bultitude / Kay Thomas

[Bengalkit]

Hi there.. I am a patient with Cystinuria. Unfortunately, there is not a local support group in this area Aberdeen (Grampian) or even further North as far as I am led to believe... having asked the Consultants at Aberdeen Royal Infirmary.

Any questions have to be relayed at the appointments with hospital Consultants both surgical and medical. This can be difficult, as time is precious and often they cannot provide supportive answers as they are not experts in this field. While there is a strong support group " UCAN" for urological cancers there is, as far as I am aware nothing for rare kidney diseases.

Any information regarding this Support Group has been sourced by myself and at times I feel quite isolated, as there's no-one to share information or even have a chat to and share experiences. I have thought about starting a Support Hub for people with Rare Kidney Diseases ... but remain unsure how to go about it. But nothing ventured .... as they say.

Hope this information will be helpful

Chris Mitchell

[APdesigns]

Hi Matt

I have been fortunate to have had not too many problems once the hospital had found out

what my problem was. Had to wait until the then new lithotripter machine was installed and up and running at St Thomas's in 1985. Think I was operated on by your dad! Being the first patient with cystine stones on that machine I got a lot of attention. How things have progressed from 1985 (for the better). When I moved or had a new consultant, they have always been very interested to find out what they can about cystinuria and have tried to answer any questions I have had but sometimes feel they don't really know the answers. I can always phone my consultants secretary and usually get a phone call back from my consultant. Being on health unlocked has been very good. You hear different sides to things and it helps to not feel on your own. The one day get togethers at St. Thomas's have been very informative.

Hope this helps

Pam Matthews

[bertrussell]

Hi

I have been diagnosed with cystinuria for 56 years. This was trial and error to find out what was wrong with me for about 7 years before a diagnoses was made. That was under a hospital no longer in existence. st Phillips, Paul’s and Peter group. Good care over the years. Then amalgamated with I think it was UCH and care went down hill.

As to questions time is too short to get any in depth information although I will say since having transferred to Southmead at Bristol for care both the urologist and nephrologist have been excellent and do a combined clinic - that is like joined up thinking to me. Well done to them

Local hospitals have little or no knowledge of cystinuria in fact the last hospital in Dorset said I was managing so well I didn’t need my yearly check up! I was not impressed and refused to go back to them as I felt and knew that was not right and questioned it at the time.

Its been a battle to get to see knowledgeable people over the years. As to answering questions the internet is first port of call it’s like you need to tell the GP what needs To happen to make any progress. This is still very much an unknown disease .

Also very hard to find other people who have this disease to share things with.