I am an advocate, born and bred. Being an advocate is simply part of my DNA. Even when I was a young girl, seeing someone be mistreated or experience prejudice angered me. The years have taught me how to fight my battles and fight for others, but when my first…
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It finally happened. COVID-19 found me. After two and a half years of following the guidelines, I couldn’t outwit the virus. I had two vaccines and a booster on time, and I declined invitations. I wore a mask in Publix and Walgreens even when nobody else was doing it.
My mom passed away a few weeks ago. Over the past six years, it has been a great honor and privilege to be able to care for her. It was an opportunity to show love and appreciation for the person who helped shape my life and repay her for all she…
I am a patient. I am an expert on my own health experiences. I am an educator. I am an advocate. Hemophilia is a rare disease. Being a woman with a disorder thought once to be male-only makes it complicated to navigate. I…
My youngest son, Caeleb, recently turned 15. A celebration with his favorite dinner accompanied by homemade chocolate-peanut butter cheesecake ushered in another year filled with goals and dreams. After Caeleb blew out the candles, he looked up and said, “In three years I’ll be out of the…
Packing my lunch is necessary because my schedule as a hospice chaplain can change quickly. I keep food and drinks in an ice chest in my car because it can get hot here in New Mexico. When I get a call to see a patient whose passing is imminent, time…
Last Friday, my youngest son, Caeleb, finished the first week of his final year in high school. He’s a mighty senior ready to conquer the world with his incredible artistic abilities. Growing up, my son experienced hemophilia-related medical issues that most people could never imagine. I think of his…
Second in a series. Read part one here. I have been on medication for my clinical depression for over 25 years. There is no other option. Even throughout my second pregnancy, I took medication under my psychiatrist’s supervision. I’ve never been ashamed to admit my need for medication,…
Bleeding rates and the use of replacement therapies among men with severe or moderately severe hemophilia B remain low at least three years after a single dose of the approved gene therapy Hemgenix (etranacogene dezaparvovec). That’s according to updated data from the Phase 3 HOPE-B clinical trial…
When you have a bleeding disorder and you are traveling, there are many things to remember. Forgetting factor or Huber needles can leave you in a bind, because these are not items that are easily found at your local drugstore. Making a list and keeping it handy, regardless…