In an 8-year-old’s mind, it was a perfect idea. One Sunday, on a whim, I decided it was time to completely rearrange my bedroom. Third-grade me had no clue about “open concepts” or “feng shui” — I just wanted to move my dresser/bookshelf combo, my bed, and my nightstand in…
Columns
Who knew that the journey to a hereditary angioedema (HAE) diagnosis could be so scary? In our search for help with our daughter Leah’s complex health issues, we saw more than 40 medical professionals. Having doctors dismiss us made me feel like we were lost in a maze or…
“You always take the same way home,” my mom said to my father. My dad glanced at my mother, smiled, and kept driving. “Habit,” he replied. We were on our way home from school, and my father was taking our usual route. My mother chuckled. My father was and is…
I talk a lot about using my voice. As an advocate living with hereditary angioedema and multiple sclerosis, I believe in speaking up, asking questions, and making sure our experiences as patients are heard. But during a recent five-day hospitalization, I reached a point where I couldn’t. The…
Note: This column describes the author’s own experiences with various angioedema medications and thoughts about gene therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Gene therapy is a hot topic in medicine these days. It can be exciting as…
“But the most important rule … never feed him after midnight.” That was part of the ominous and infamous instructions for owning a mogwai in the 1984 thriller “Gremlins.” In the movie, Billy receives a pet for Christmas that comes with confusing and complicated verbal instructions. The cute little creature,…
I started my journey with Bionews, the parent company of this website, many years ago by signing up for a newsletter when my daughter was diagnosed with hereditary angioedema (HAE). A couple years ago, I replied to an inquiry asking for volunteers to film a video explaining the…
I did not become an advocate because I felt powerful. I became one because I had felt powerless too many times. For years, I sat in exam rooms without knowing I could question what I was being told. I accepted that unexplained swelling, severe abdominal attacks, hospitalizations, and no…
If you’ve been reading my columns over the summer, you’ll know it’s been difficult for me lately. To say I have had some challenges would be an understatement. I’ve faced new diagnoses and tried new medications for my hereditary angioedema. Some have helped, but others actually made…
As I’ve mentioned before, I have several diagnoses, some considered rare and others not so much. My first big one was Lyme disease. Frankly, I’ve never felt a return to “normal” since having it, and subsequently it was deemed chronic. I also have Ehlers-Danlos syndrome, mast cell activation syndrome,…
Recent Posts
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- Longer gaps between HAE treatment injections may be possible, study finds
- Experimental oral treatment quickly controls HAE attacks in Phase 3 trial