There is a funny cartoon making the Facebook rounds. It shows two images, one for “normal parents” and the other for “medical field parents.” The normal parents’ side has a duck dressed as a doctor and a mama duck holding her baby up, saying, “He sneezed! Help…

Half a year has gone by since disgraced pharma executive Martin Shkreli was sentenced to seven years in federal prison for securities and wire fraud while heading San Diego-based Retrophin. As founder and CEO of another company (then known as Turing Pharmaceuticals), in late 2015 Shkreli bought the rights to…

Today, I received a phone call from my dad. He wanted to talk to me about safekeeping some of his finances, as he had been planning to travel to our hometown to sort out some property-related matters. Since my mom passed away in June, he has been focused on getting…

Dear Doctor,      We are concerned about the plan regarding our son’s treatment … The letter started out that way. Like many people, we lived in a culture that treated our doctors like gods. How dare we question anything! They had medical degrees, and we did not. Trust…

I have suffered from clinical depression most of my life. Five weeks after my eldest son was born over 22 years ago and diagnosed with hemophilia, my mom passed away. It was not a good time. I had planned on taking maternity leave until after Labor Day, but…

Tomorrow is a long-awaited milestone in my pregnancy. I am scheduled to have an ultrasound, during which we will finally learn our child’s definite sex. My OB-GYN will also check for structural anomalies. I feel excited and nervous. All my husband and I want is a healthy child. But with…

Before I share my story, I must make a disclaimer. The pastor/counselor side of me cannot continue without acknowledging that my story is not everyone else’s story. Some people in the bleeding disorders community do not have the support that many of us appreciate. I can’t believe how…

Wash your hair. Brush your teeth. Please, for the sake of the world, put on deodorant! Hundreds of times I have given those commands to my sons. Well, not so much “commands” as directives. I know I taught them basic hygiene at a young age, but why is it…

I am a pregnant entrepreneur. Throw in a husband with hemophilia and epilepsy into the mix, and there you have it: the crazy life I’ve been living for the past five months. Let’s do away with the inspirational mumbo-jumbo that goes, “Everything will be OK, just have faith!” Instead, let’s…

More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit. The Oct. 15-16 event, sponsored by the National Organization for Rare Diseases (NORD), takes place at the…