A name is not mere letters on paper or a screen, but a way to proclaim our existence. What we call ourselves lets the world know who we are. My name, Joe Keith, comes from my great-uncle (my grandfather’s brother). I take a great deal of pride in carrying on…
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SB-FIX, developed by Sangamo Therapeutics, is an investigative gene therapy for hemophilia B that, by making changes to the DNA sequence, may allow hemophilia B patients to make their own factor IX protein. (Factor IX is missing or present at low levels only in patients with hemophilia B,…
Mother’s Day is this Sunday. The day dedicated to honoring mothers began in the early 1900s. It’s a special time of joy and celebration, with families going out for lunch and mothers receiving cards and flowers. That’s the picture-perfect version of what Mother’s Day looks like in a television…
Columns
Finding Routine in Chaos
Having a family member admitted to the hospital throws the entire family’s routine into absolute chaos. We lose our control of time, as well as our privacy. While it is great to see a friend or to hear good news from the medical staff, we are unable to dictate…
Cumbersome security procedures, rising airfares, and shrinking legroom have made commercial air travel difficult enough these days — even for healthy passengers. Imagine how much harder it is for patients with rare diseases who must get to doctors’ appointments or clinical trials that are hundreds of miles away from home.
One of the best things about my relationship with my wife is our team approach to difficult circumstances stemming from hemophilia. I tend to remain calm at the beginning of a problem, while she is active toward the end. Our responses mostly happen automatically, like clockwork. We are grateful…
My youngest son Caeleb suffers from seasonal allergies. He gets severe headaches, congestion, a runny nose, watery eyes — it’s not fun. One of the telltale signs that he is genuinely sick is when he vomits from a headache; otherwise, I chalk most things up to allergies. On a Sunday…
Doctors in Canada are proposing a set of measures to better judge outcomes and the success of programs helping teen-age hemophilia patients transition to adult care, especially for those with more severe disease. They also listed 15 “key elements” of a successful pediatric-to-adult transition program, including eight the doctors saw as feasible…
Columns
When He Leaves Home
My oldest son will be moving out of the house in a few weeks to rent an apartment with a good friend of his. My mind continues to bring light to the fact that he is 22 years old. It is time for him to spread his wings and leave…
The other day, I ran across a tiny, plastic bag that contained a blue bead representing a clinic visit. My son Caeleb was part of the Beads of Courage program at the University of New Mexico Children’s Hospital. The program uses glass beads donated by artists to help…