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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: it’s okay to cry

Early Years

The Dark Moments

December 16, 2014July 12, 2016 Amanda

For the most part I try to keep this blog as positive as possible, because even though cystinosis is a scary, lifelong disease it can be mostly managed by medications and I know that Elsie can still live a long, beautiful and fulfilling life. But sometimes I worry that I'm not accurately portraying the seriousness… Continue reading The Dark Moments

Tagged dark moment, it's okay to cry, medication scheduleLeave a comment

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.

Donate

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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