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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: memories

Early Years, Lifestyle

Looking Back

May 31, 2017May 31, 2017 Amanda

Lately I've thinking about how my life has been clearly divided between life before cystinosis and life after. This feeling is never more apparent than when I'm looking back at old photographs of Elsie. Although she's had cystinosis all of her life we didn't know about it until she was 15 months old. That's 15 months we had of… Continue reading Looking Back

Tagged cystinosis, looking back, memoriesLeave 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.

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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.

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