Last week, I was on Facebook and a post I had been dreaming about appeared on my timeline. The U.S. Food and Drug Administration has approved a new therapy, Hemlibra (emicizumab-kxwh), for patients with hemophilia A and inhibitors. It’s the first new medicine for inhibitors in almost…
Hemophilia 24/7
— Cazandra Campos-MacDonald
Rev. Cazandra Campos-MacDonald is a pastor, author, motivational speaker, and encourager. She lives in New Mexico with her husband, Rev. Dr. Joe MacDonald, and youngest son, Caeleb. Their adult son, Julian, is living the bohemian life of a starving artist and goes wherever there is an audition. Her sons live with severe hemophilia A and inhibitors. Her older brother died shortly after birth due to complications from hemophilia. Cazandra writes candidly of raising two sons with a rare bleeding disorder. She believes storytelling is about redeeming the journey and connecting with others.
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I’ve lived in New Mexico for 20 years, but I only recently visited the Loretto Chapel in Santa Fe. The chapel is known for its spiral staircase, built in 1878 with wooden pegs only, no nails. The staircase rises 22 feet to the choir loft without any central support.
Normal. I’m not exactly sure if I know the definition of normal. I’m thinking that most normal people would probably not suffer from any kind of illness. No allergies, diabetes, pain or infusions would be part of a normal person’s life. When you live with a chronic condition,…
When you live with a chronic illness, it is easy to feel alone. You can get mired in the daily struggle of caring for your loved one, or yourself, and it can quickly become overwhelming. There are days, and even weeks, when life with your illness is manageable,…
The hemophilia landscape is much different today from 21 years ago, when my first son was born. There were not many choices in products and they all seemed to do the same thing — help with clotting when the body needed it. Over these years, we even went…
When you infuse through a port there are several steps to completing an infusion, as opposed to a peripheral stick. Having all the supplies together and prepared and opened in a certain order to maintain good, sterile technique helps make the process move along quickly. Especially when you…
My mighty warrior Caeleb is only 11 and has had six ports. One cracked, another became infected, one literally worked its way out of his body. You get the picture. But when you are infusing daily for immune tolerance, daily peripheral sticks are not always possible. For the…
Some words can be offensive. I’m not talking about some of the obvious, obnoxious words in the world, I am talking about two words in particular: disease and disorder. If you look at a list of rare diseases, hemophilia is listed. But you don’t ever hear anyone say,…
When your child is little and isn’t able to verbalize pain, you find yourself worrying constantly that you are missing something. “He’s crying, is he having a bleed? Or does he need a diaper change?” You must be the one who identifies why your little one is in distress.
The National Hemophilia Foundation hosts an annual meeting with workshops, exhibits, and social gatherings for the bleeding disorders community. It’s a time when consumers, providers, and industry come together to support one another. When you have been in the community for more than 20 years, the best…
“How many kids with hemophilia does it take to change a light bulb?” “None. Their mother will do it for them.” This is a joke that was told by a former HTC social worker friend. Of course, I chuckled, because I know there is an unfortunate amount of…
There have been seasons when hemophilia became the center of my family’s universe. A bleed would start and before it healed completely, it re-bled, or a new one began. Visits to the clinic for appointments, timed blood draws, unpacking factor and supplies, phone calls about co-pay assistance, factor…
Routine blood draws are a necessity when you have an active inhibitor. I try to get Caeleb’s lab work done at least every two months, and the results will give us his Bethesda unit (BU) and half-life status. Having a zero BU is ideal but that alone does…
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