Wednesday, September 5, 2012

This or That But Always F~A~I~T~H!

Less than two weeks before Bee's 10th birthday & my quest continues to keep her health at an optimal level - tonight just a few minutes ago I received an email from the EB Care Registry stating the following:


"Thank you for all the additional information. I consulted one of the clinical experts for the EBCare Registry who agreed with moving her to the generalized, other category (RDEB-GO)."

So Bianca has been moved from the Recessive Dystrophic EB - severe generalized (RDEB-SG, formerly RDEB-HS) category to the Recessive Dystrophic EB - generalized, other (RDEB-GO, formerly RDEB-non HS). This doesn’t mean her challenges and way of life changes but it just solidifies what I’ve always known – that RDEB - no matter how clean cut you try to put it - cannot have just one category & two sub-categories. Today I’m sure that the advances that are much more tangible are slowly putting a bigger picture together!
DEFINITION OF BEE'S FOREVER EVOLVING "CATEGORY"

Recessive Dystrophic EB - generalized, other (RDEB-GO, formerly RDEB-non HS) = A more common RDEB subtype, formerly known as non-Hallopeau-Siemens RDEB (and probably best referred to as generalized mitis RDEB), has similar but less severe cutaneous involvement and a much lower risk of esophageal strictures, corneal injury, or hand or foot deformities. Growth retardation and anemia are extremely uncommon. However, these patients still have a significant risk of developing squamous cell carcinomas (47.5% by age 65), although the risk of death from metastases (60% by age 65) is lower than that which is seen in severe generalized RDEB. (Inherited Epidermolysis Bullosa - Dr. Jo-David Fine)

Always "keep the faith"!

Bee & Zach - Aug 2012

Bee totally concentrated on her masterpiece!

These beautiful pictures were taken at the 2012 Debra PCC by Christie Zink - such a warm soul and talented woman!
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