Written by Julie Ostroff on May 13, 2022
I am a parent to a daughter with genetic disorder 22q11.2 deletion syndrome (commonly known as DiGeorge syndrome). She was born on July 1, 2021 and diagnosed on July 23 through a chromosomal microarray blood test. The entire month of July was a whirlwind. Her health issues began with seizures… Read More
Written by Julie Ostroff on April 29, 2022
I am a mom of a beautiful rare and unknown disease warrior. Sarah is 10 years old and has been facing a disease that is unknown for two years. We are trying IVIG treatments, and if they don’t work, we are being sent to the National Institutes of Health (NIH)… Read More
Written by Valaree DonFrancesco on February 29, 2020
I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am in the thick of my second one (a relapse), and… Read More
Written by Valaree DonFrancesco on February 29, 2020
I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor puzzled. I was then rushed to a different hospital, four… Read More
Written by Valaree DonFrancesco on February 29, 2020
I was diagnosed with primary immunodeficiency when I was four years old. With primary immunodeficiency, the assumption is that “it’s just an infection” or that it’s normal because “kids get sick.” The problem was that I was never getting better and… Read More