Skip to content
Elsinosis: Living with Cystinosis

Elsinosis: Living with Cystinosis

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

  • Instagram
  • Facebook
  • Pinterest
  • Twitter
  • About
  • Archives
  • Cystinosis Resources
  • Other Writings
  • Contact Me

Tag: video premier

Fun Stuff, Lifestyle

It’s Alright

March 9, 2019March 11, 2019 Amanda

First off I am so, so sorry that it's been over a year and a half since I last posted anything! I had all these plans for regular updates but then I went back to work full time and with parenting two children and general life things this fell by the wayside and I'm sorry… Continue reading It’s Alright

Tagged it's alright, mother mother, video premierLeave 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.

Instagram

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

  • Instagram
  • Facebook
  • Pinterest
  • Twitter
A WordPress.com Website.
Cancel