Friday, June 20, 2014

Cystinosis Awareness Blog Train

Here is an Awareness specialy for my dear friend Tam, whom son suffer from Cystinosis Disease :
Cystinosis is a rare disease that is typically diagnosed prior to age 2.  Cystinosis is a genetic metabolic disease that causes an amino acid, cystine, to accumulate in various organs of the body. Cystine crystals accumulate in the kidneys, eyes, liver, muscles, pancreas, brain, and white blood cells. Without specific treatment, children with cystinosis develop end stage kidney failure at approximately age nine.
There are three forms of Cystinosis. Infantile Nephropathic Cystinosis is the most severe form of the disease. Children with Cystinosis appear normal at birth, but by 10 months of age, they are clearly shorter that others their age. They urinate frequently, have excessive thirst, and often seem fussy. At 12 months, they haven't walked and bear weight only gingerly.
One of the major complications of Cystinosis is renal tubular Fanconi Syndrome, or a failure of the kidneys to reabsorb nutrients and minerals. The minerals are lost in the urine. The urinary losses must be replaced. Generally, they are picky eaters, crave salt, and grow very slowly. If left untreated, this form of the disease may lead to kidney failure by 10 years of age.
In people with Intermediate Cystinosis or Juvenile (adolescent) Cystinosis, kidney and eye symptoms typically become apparent during the teenage years or early adulthood. In Benign or Adult Cystinosis, cystine accumulates primarily in the cornea of the eyes.
Read more at https://cystinosis.org
Here are what the bunch of generous and adorable women comes with :

Angel Wing Scraps
Ostrea Designs
KJD Designs
Rhonda B. Studio
Dea’s Design
Marniejo’s House Of Scraps
Ann’s Scrapbook Heaven
Dreamn 4 Ever Designs
Shuckclod’s Stuff
Caroline B.

and here is my part :
CarolineB_CystinosisAwarenessFREEBIE
(Too late, but sign up to receive my newsletter and keep track of the new freebies.)

Enjoy and let us comments.



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