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Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

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Suggest Treatment For Cystinosis

I have recently been diagnosed with Adult Cystinosis. My eye doctor, Dr. Sierra told me that my regular doctor will have to monitor my kidneys, and that I will have to take medicine daily. I am very confused about the Cystinosis, and very worried, my doctor still has not prescribed any medicine, nor have I had my kidneys checked. It has been three years. I cant really find any information about the Cystinosis so that I can try to self manage and not end up in the hospital. Any input or advice would be greatly appreciated. Oh yeah, my name is Maureen and I turned 50 yrs old in October.
posted on Mon, 7 Dec 2015
Twitter Thu, 26 Mar 2020 Answered on
Twitter Fri, 27 Mar 2020 Last reviewed on
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General Surgeon,  's  Response
Hello,

The Cystinosis is rare clinical condition, caused as autosomal recessive disorder of cystine transport in the body affecting various organs as muscle, kidney, liver, white blood cells, eyes and central nervous system. For the kidney aspects, it presents with frequency of urination and thirst. There are various modalities of management, common precautionary measures are symptomatic:
- Free access to water intake
- Provision of salt and minerals lost in the urine
- High doses of vitamin D and phosphate to compensate the urine loss

Be in regular follow up with your doctor for further guidelines.

Hope I have answered your question. Let me know if I can assist you further.

Regards,
Dr. Bhagyesh V. Patel, General Surgeon
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Suggest Treatment For Cystinosis

Hello, The Cystinosis is rare clinical condition, caused as autosomal recessive disorder of cystine transport in the body affecting various organs as muscle, kidney, liver, white blood cells, eyes and central nervous system. For the kidney aspects, it presents with frequency of urination and thirst. There are various modalities of management, common precautionary measures are symptomatic: - Free access to water intake - Provision of salt and minerals lost in the urine - High doses of vitamin D and phosphate to compensate the urine loss Be in regular follow up with your doctor for further guidelines. Hope I have answered your question. Let me know if I can assist you further. Regards, Dr. Bhagyesh V. Patel, General Surgeon