I was diagnosed with Cystinuria in November 2010. I had problems from August 2008, but was not believed until I had an actual blockage that September. I was stented, but due to being scared and doctors cancelling appointments on me the stent was left in for over a year. I had no more problems until January 2010 when I was admitted with serious pains in my left side where the stent was left.

I was told that stones had grown all over the stent so they had to go in via my back and remove the stent. All went well with the operation, but I suffered very bad pains constantly and spent a lot of time in and out of hospital. Finally, I was able to get the stones tested.

Then in November 2010, I was told that it was Cystinuria or as he called it “Cystine Stones Disease.” I was told to keep active, drink a lot of water and take pain medications. I have only been in the hospital twice for stones this year, as opposed to the countless amounts of time last year and no surgery was needed both times.

It has been a real journey, but now my doctors are “in the know” due to an information pack I made for them.  My last hospital trip was a 24 hour one. They knew me and my condition, so I was processed quicker and given extra pain medications to help me cope. I passed stone and went home.

Although at times it is hard to deal with as no-one else in my family has this, I have found a couple of greatly supportive Facebook groups that have helped me more than I think they realize. I continue to go from strength to strength with everyone’s support.

Samantha Walker
Norfolk, UK

1 thought on “Meet Samantha – Battling Cystinuria or Cystine Stones Disease”

  1. Jessica says:

    Hi Samantha! I have a rare disease that is a distant cousin of cystinuria – in fact, before it earned its own name (cystinosis), it was often confused with cystinuria. It involves the buildup of cystine in all the cells of the body. I am so glad you are finding support – stay strong!

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