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Elsinosis: Living with Cystinosis

Elsinosis: Living with Cystinosis

A real life account of beautiful Elsie and how she lives with cystinosis

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Tag: g-tube

Early Years, Medication / Medical Aides

And the NG Tube is Out

February 5, 2014July 26, 2016 Amanda

Our family saga with the NG tube is at an end. It was only in for a week but it felt like years and I have to say it was the most trying thing we've been through during this whole cystinosis thing. The insertion of the tube went pretty much as we thought. They swaddled… Continue reading And the NG Tube is Out

Tagged cystinosis, g-tube, NG tube3 Comments
Early Years, Medication / Medical Aides

Risky Business

December 7, 2013July 26, 2016 Amanda

No we weren't trying to recreate the famous Tom Cruise pantless dance scene, I was actually trying to get a "clean catch" urine sample from Elsie. Which was indeed risky business. We were at the renal clinic on Monday and her recent urine test came back with a large amount of white blood cells in… Continue reading Risky Business

Tagged cystinosis, g-tube, gastrostomy tube2 Comments

Intro

Hi my name is Amanda and my daughter, Elsie, has cystinosis - a rare, genetic, metabolic disease. Right away I found all the facts about cystinosis and its treatment overwhelming. What I really wanted to know was if my little girl was going to be okay. Could she still have a happy, normal life? The answer is absolutely!

I've created this blog so that other families affected by cystinosis can follow our journey through this disease, learn what life is going to be like and how one happy, amazing little girl makes it through.

Above all else just know that there is hope, you're not alone and your life can still be filled with love and laughter.

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Because cystinosis affects only an estimated 2,000 people worldwide there is no government funding for research towards better treatments and hopefully one day a cure.

The Cystinosis Research Foundation commits 100% of your donation to issues grants for bench and clinical research studies in order to accelerate research progress and ensure that cystinosis research is on-going.

Click on the logo to donate today

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