In my experience, raising two children with a chronic illness includes the usual worries that parents and other primary caregivers often face. It also creates issues that directly address medical needs and concerns related to treatment. For instance, not every family deals with spontaneous bleeding into the joints. For…
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I have big dreams for my sons. I want them to go to college, have successful careers, and find loving partners. I hadn’t thought that these things would be out of reach for either of them. But I did believe at one time that my mighty warrior Caeleb would be…
An opportunity arises Five years ago, Ashley Gregory was asked to head The Female Factor (TFF), a program sponsored by the Hemophilia Foundation of Northern California (HFNC). According to Ashley, this opportunity brought her out of her shell and helped her to discover an affinity and…
Now and then, my husband, Jared, loses consciousness and falls to the ground. To an unknowing onlooker, the sight is alarming. Some wonder if he has fainted. Others worry about his heart or think he may have had a stroke. As his wife of one year and partner for five,…
I recently noticed that our healthcare providers offer virtual visits as part of our current insurance. I was fortunate last week to attend an event hosted by the Virginia Quality Healthcare Network. The presentation featured a talk on telehealth by Dr. Karen Rheuban, co-founder and director of…
My wife and I were trying to find the perfect gift for one of our favorite people. We needed to find a bow tie, but not just an ordinary, humdrum kind. It must have a road map from one place to another. Our friend, who happened to be one of…
My 13-year-old son Caeleb, who had severe hemophilia A and an inhibitor, has not had a bleed in five years. For three of those years, he received a daily infusion with a plasma-derived product, and for the past two years, he has been on a treatment that…
A conversation Last night I dreamed that I spoke with my father. I asked him how he knew he had a bleed. Did his knee bubble like a soda? Was it tight, but not painful? I yearned for his input, but my alarm sounded before he was able…
A few days ago, I gave my husband, Jared, a factor IX infusion for a back bleed. It wasn’t so bad that he couldn’t move around, but in his words, it felt “annoying.” He was already suspicious about it the night before, but he decided to wait it out,…
Last week, I did something I never dreamed I would do: I taught “MacDonald the Younger” how to ride a bike. At 13, he is considered a senior statesman in our neighborhood. Other children learn at age 5 or 6 how to balance on two wheels and head down the…
Recent Posts
- In sharing our rare disease stories, our collective light shines brighter
- New test may help fine tune care for those with acquired hemophilia A
- Mild hemophilia patients should monitor their clotting risk after surgery
- Rethinking care expectations in an adult partnership
- Growing up before treatments for hemophilia were safe, part 1