Tag: renal clinic

Finding Out About Cystinosis

November 8, 2013July 26, 2016 Amanda

Cystinosis? What the hell is cystinosis? Elsie was born a bright, beautiful and large baby girl (8lbs 11oz) who immediately made everyone that met her fall in love. As our first child, Dave and I were in for a sharp learning curve. You mean she needs help to fall asleep? But by 2 months we… Continue reading Finding Out About Cystinosis

Tagged cystinosis, diagnosis, rare disease, renal clinic9 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.

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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