Cystinuria Support | HealthUnlocked

Cystinuria Support

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Business As Usual

Great to return to Guy’s Hospital last Friday after a break of three years (was ...

Supplements Query

Hi Everyone, This is my first time posting here. Are there any supplements that ...

COVID Vaccine

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

advice help please mum of a cystinuria son

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

Vitamin D

Hi There has been a lot of talk recently about the benefits of Vitamin D but I a...

Ct scan for diagnosis

Good morning I’m a new member here so a bit of advice would be very welcome.Ive ...

Contact with others :)

Hello! My partner has cystinuria and I wanted to see if anyone wanted to chat if...

Alpha Lipoic Acid (ala)

Has anyone tried Alpha Lipoic Acid (ALa) supplement. There is a trial going on i...

Cystinuria medication

What medicine has worked best for cystine stones?

See below

Interested to know how long this cystinuria support page been here. I might have...

Cystinuria support and resources?

Hi all. We are involved in a group discussing support for patients (or carers) w...
Administrator

Support during lockdown

Good morning hive mind. I'd be interested to hear how people have sought and rec...
Administrator

Coping as a teenage stone owner

Hi, I am a parent of a 13 yr old cystinuria patient (diagnosed at 6-lots of ston...

Appointments

Good morning, I’m guessing that the upcoming appointments, I’ve got one for the ...

A Time to Say Thank You

The obvious place to give a huge shout out to all who work as part of our NHS. T...
Administrator

Should I isolate for 12 weeks

I hope everyone is staying well both mentally and physically at this difficult t...

COVID-19 and Cystinuria

We have had a number of calls, emails and posts on here regarding the effects of...
Administrator

Classification

I hope everyone is staying safe, this might help

Define Chronic

Is Cystinuria classed as Chronic

Self Isolating

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

Is cystinuria +/- having one kidney an 'existing underlying condition' making cystinuria patients a vulnerable group re Coronavirus?

Are those of us in otherwise good health a vulnerable group? I heard from someon...

Penacillamine issues

When supplies of penacillamine come back in stock the hospitals will be the firs...

Penacillamine supply issues

Hi have spoken to Mylan this morning who supply/distribute my penacillamine- the...

Got my penacillamine

Thank you to Guys Hospital for sending them to me

Appointment Guy Hopsital

Hi, Just wondering if anything been put in place regarding outpatient appointme...

Penicillamine

Still cannot get anywhere. Need help. Does anybody know if Guys Hospital have a...

Feedback and suggestions

We are pleased to see this forum being used and there have been some important d...
Administrator

Tiopronin and Stretchy skin?

Any one else on here who has ever taken or is still on Tiopronin had issues with...

Stone Free for almost 2 years

Had another great check up at Guys hospital today! Now stone free for almost 2 y...

Tiopronin supply issue

Has anyone been experiencing supply issues with tiopronin medication? I was rece...
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About us

We are a peer-support group for patients around the world with cystinuria to share stories and ask questions. ...

Read more about Cystinuria Support