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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: NG 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

To NG or not to NG?

January 17, 2014July 26, 2016 Amanda

  That is the oh so difficult question. We had our monthly check up at the renal clinic on Monday and they want Elsie to have a nasogastric tube (NG tube) placed while we wait for a G tube. Unfortunately we're unable to see the surgeon until the beginning on February and even then she… Continue reading To NG or not to NG?

Tagged cystinosis, nasogastric tube, NG 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.

Instagram

Today is rare disease day and this little lady is just one of millions of people out there living with a rare disease. She’s strong, resilient, and currently a giant pain in the ass who knows what she wants and will not compromise for anyone. And we love her. Always and unconditionally. I wish life were easier for her, but I think she’s doing great as is. We love you Elsie. So very much πŸ’–
I hope everyone had a safe and Happy Halloween πŸŽƒ
Just look at all that third grade attitude! Don’t know where she gets it from 🀫
So apparently I am now the mother of an 8-year-old wizard. Where has the time gone 😩πŸ₯³
She really is magical ✨
Picking strawberries πŸ“πŸŒž #strawberryseason
Someone wanted to do her hair for a friends zoom party today 😍 My sister is an amazing hair and makeup artist and has been posting these great tutorials on @kerrywaring so obviously we had to try. And really who can say no to this face? πŸ’•βœ¨ #lovehertothemoonandback
Today, May 7th, is cystinosis awareness day! Named after the 57 kb deletion, one of the most common genetic mutations responsible for cystinosis, this day is a time for us to raise awareness for this rare, genetic, metabolic disease.

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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