Cystinuria Support | HealthUnlocked

Hi I am very new to this group and wonder if you may be able to help me. My cystinuria has been alife long battle, too many surgeries to mention. For the past...

Our 3 year old has cystinuria, we are hoping to go away on holiday abroad next year and wondered how other cystinuria patients have managed trying to get a low...

I have been taking alpha lipoic acid for 18 months now. For the last 10 years everytime I’ve been to the clinic twice per year at least my stone loading...

Matt Bultitude from the Guy's Hospital stone team taking part in an interesting video discussion covering many aspects of kidney stone chemistry, formation and...

Good morning, did any of you do a genetic test? In my case, my son has developed the disease and only I am a carrier, his father is not. I have been reading...

Hello, Wondering whether anyone can help please. I am a Cystinuria patient, and am looking at taking Alpha Lipoic Acid tablets to prevent stone formation. I...

Great to return to Guy’s Hospital last Friday after a break of three years (was due to go in April 2020). Good to see the gang again

Hi Everyone, This is my first time posting here. Are there any supplements that should not be taken by people with cystinuria? I am exhausted all of the time...

Hi, just wondering when we will get the vaccine. Are we class as vulnerable. Thanks

can anyone advice me ways to help my son please read my story thank you x

Hi There has been a lot of talk recently about the benefits of Vitamin D but I am not sure how safe it would be for my husband who has Cystinuria to take. Can...

Good morning I’m a new member here so a bit of advice would be very welcome.Ive suffered with passing the odd stone for quite a few years now but never been...

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...

Has anyone tried Alpha Lipoic Acid (ALa) supplement. There is a trial going on in California with it. Just wondering if anyone has tried it.

What medicine has worked best for cystine stones?

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...

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...

Good morning hive mind. I'd be interested to hear how people have sought and received support since the March lockdown. I've just opted for a phone...

Hi, I am a parent of a 13 yr old cystinuria patient (diagnosed at 6-lots of stones) been stone free for years but currently she is really not managing well...

Good morning, I’m guessing that the upcoming appointments, I’ve got one for the beginning of May, are going to be postponed until this horrible situation...

The obvious place to give a huge shout out to all who work as part of our NHS. Thank you so much for all that you do, not just in these times, but at all...

I hope everyone is staying well both mentally and physically at this difficult time. As the spread of Covid-19 and the actions we are advised to take...

We have had a number of calls, emails and posts on here regarding the effects of COVID-19 on patients with cystinuria. We appreciate the current situation is...

I hope everyone is staying safe, this might help

Is Cystinuria classed as Chronic

Anyone self isolating U.K. with Cystinuria I have a 12 year old

Are those of us in otherwise good health a vulnerable group? I heard from someone whose husband has one kidney that Covid-19 leaves kidneys damaged as well as...

When supplies of penacillamine come back in stock the hospitals will be the first to get supplies before being released to other pharmacies.

Hi have spoken to Mylan this morning who supply/distribute my penacillamine- there is no stock and there is a supply issue. 125mg due in 13th April and 250mg...

Thank you to Guys Hospital for sending them to me