Patient 1

PY 68 years old

“I had bowel cancer and needed to have an operation and a large amount of my bowel removed. After this, I had a lot of problems with diarrhoea and absorbing my food.

I was going to the toilet almost 10 times a day sometimes. After this I had some pain and burning on passing urine. I had an ultrasound scan which showed stones and calcium in my kidneys.

I went to the Steinsprech­stunde – they did various investigations, the 24 hour urine collections were a bit annoying! But they are ok when you get used to them. I was told I had too much oxalate in my urine, caused by the fact I have a short intestine. I was given advice on changes I can make to my diet to improve risk of getting more kidney stones. I was also invited to take part in a clinical trial – it is good to be given the chance to help discover new treatments”.

Patient 2

JK 21 years old

“My older brother and two of my cousins have had primary hyperoxaluria for as long as I can remember. I was first diagnosed after getting tested after we found out my brother had kidney stones.

I used to be looked after by the paediatricians at the Charite but now because that team works together with the doctors here, I transferred. It was all very smooth. We were able to the genetic testing and get access to the new medication, Oxlumo. Now everything is very stable and I come every 3 months for my medication and for blood tests and a urine collection.”

Patient 3

DS 31 years old

“I had a diagnosis since childhood of an inherited kidney stone disease based on the results of urine tests and stone analysis. I was glad we could repeat these here, and also do the genetic testing to confirm the diagnosis. This means that my rare disease can be investigated further and being in a specialist clinic means that if there are new trials or treatments then I can hear about them. I live at the other end of the country so we work in combination with local doctors to get my routine blood tests done.“