Blog Quotes Part 5

Feel free to save them and share! To save the bigger version of the image, click on the image first to load it, then right click to save image.

It’s also very important to note that EB is just an umbrella word. A word that throws together all blistering conditions no matter how they are inherited or how they manifest themselves.

Back in the late 1800s/early 1900s, when the words Epidermolysis Bullosa first appeared, the Doctors told patients they had EB if they blistered. It’s like if Doctors bunched up together all conditions which feature rashes (eczema, psoriasis, rosacea or shingles) or conditions that feature the progressive deterioration of nerve cells (Tay-Sacks Disease, Parkinson’s & ALS).

It’s extremely important to know that each form of EB is different in the way it’s inherited, in the way it manifests itself, in the way blisters appear, in the way the wounds are to be treated, the way skin heals, in qualify of life, life expectancy and so on..

When it’s all said and done, if all I accomplished in this lifetime is that I loved and took care of my family and raised even a little of EB Awareness… my job is done.

I am not posting this picture to evoke sympathy or pity. I am posting it to open a door into our lives to help others understand, to educate and build acceptance for children and adults living with Epidermolysis Bullosa.

As much as I applaud and wholeheartedly support women’s rights in every aspect of society, I wish being a stay-at-home mom came with some respect.

Love & Light,

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