My youngest son continues to celebrate good health. The last time he suffered a joint bleed was in February 2014. A million years seem to have passed since the days of horrific bleeds and endless hospital visits. We used to know every nurse by name on the pediatric…
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Octapharma USA Sponsors Retreat for Women With Bleeding Disorders and Screens ‘Bombardier Blood’
There are still too many women with bleeding disorders who, despite symptoms, are unaware of their disease. That circumstance will be a major topic Oct. 19-21 at The Fourth Annual Female Factor Retreat, hosted by the Hemophilia Foundation of Northern California (HFNC). Other topics at the educational retreat, to…
Invisibility Is Not the Easy Way
I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?”…
My husband Jared mentioned in his latest column that he works at a local organization called the Hemophilia Association of the Philippines for Love and Service (HAPLOS). It is truly a pleasure to serve other people with hemophilia, along with their families and carers, through the organization’s efforts.
‘Baby Is Sooo Big’
There is a children’s picture book called “How Big is Baby?” The response to the baby is, “Baby is sooo big!” It is a great book as it empowers our children to know that they are a large part of life. We remind them that the love we…
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…