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Archives for: February 29th, 2020

Savannah’s Story in honor of Rare Disease Day

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

Bridget’s Story in honor of Rare Disease Day

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

Ashlee’s Story in honor of Rare Disease Day

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

Wyatt’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 4, 2020

This story is about our son, Wyatt, who was diagnosed with Coats plus syndrome at the age of ten. The story starts with my pregnancy. At 26 weeks, during a normal pregnancy, I suddenly felt the baby stop moving. Fearing… Read More

Zuhriah’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 4, 2020

This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started to experience the impact when I was five and broke my clavicle when I fell down… Read More