October 5, 2018 epidermolysis bullosa, September 2018 Feature - Skin Conditions, Skin Conditions, Whitney 1 Comments

Epidermolysis bullosa. It’s a bit of a mouthful, and that’s just the start. Beyond the general diagnosis lie various types and subtypes that add multi-syllabic words to an already difficult to pronounce condition. Epidermolysis bullosa is the condition our daughter was born with. It causes her skin to be extremely fragile – shearing off and …Read More

September 27, 2018 adopting as first time parents, adoption community, epidermolysis bullosa, Family Stories, September 2018 Feature - Skin Conditions, Skin Conditions 0 Comments

According to the Dystrophic Epidermolysis Bullosa Research Association (DEBRA), a U.S. based nonprofit organization that supports the Epidermolysis Bullosa (EB) community, Epidermolysis Bullosa (or EB) is a rare, genetic connective skin condition in which not enough protein is produced to allow skin to adhere to itself. In the U.S., one of every 20,000 births are …Read More

September 11, 2018 adopting as first time parents, Adopting Scenarios, albinism, Family Stories, September 2018 Feature - Skin Conditions, Skin Conditions, switching to another country 2 Comments

It was only a couple of months after we were married that my husband and I started researching adoption. We both wanted a family, and with me being over 40 and having a history of endometriosis, conception without major fertility treatments seemed nearly impossible. We decided, for us, it was more important to parent a …Read More

September 5, 2018 adopting again, birthmark, developmental delays, Family Stories, linear sebaceous nevus, older child adoption, September 2018 Feature - Skin Conditions, Skin Conditions, speech delay, undiagnosed SN 0 Comments

In 2011, we received the file of a little girl, age 3. Her file read “delayed mental development” and it included a very low DQ score. We were able to ask questions and receive a video of her reading flashcards and reciting the names of the items on the flashcards. “Okay,” we thought. “Yes, she’s …Read More