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…
Dancing with Rare Disease - a Column by Natalie Sirota
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…
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…
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,…
Hereditary angioedema (HAE) is an interesting disease. My personal experience is that it can be very unpredictable. I’ve experienced a plethora of unusual, seemingly random, and unexplained symptoms throughout my life. Since childhood, I’ve had unexplained rashes, respiratory issues, and gastrointestinal complaints. Looking back, I think they might’ve…
Note: This column describes the author’s own experiences with Andembry (garadacimab-gxii) and other medications. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Last month, I shared that I was overwhelmed when my immunologist suggested I try a new…
Living with a rare disease isn’t necessarily something I’m proud of. However, I do take great pride in standing up for the rights of those of us who live with disabilities. Speaking out through my column is one way I can advocate. Disabilities are much more complex than many people…
As a person of faith, I was excited to learn that June 21 is not only Father’s Day, but also World Peace and Prayer Day. I am a huge proponent of peace, love, and prayer. Whether you see prayer as personal meditation, corporate affirmation, or just communion with greater consciousness,…
Change happens, and it can be good, bad, or neutral. How we deal with it is the real challenge. Having a family like mine that deals with multiple rare diseases means constantly confronting many challenges. When one of the rare diseases in our family is angioedema, the challenges associated…
Recent Posts
- Kid-friendly Orladeyo ‘sprinkles’ now FDA-approved for older HAE patients
- A hereditary angioedema diagnosis can be spooky
- HAE specialists cite costs, supply gaps as barriers to recommended care
- Acknowledging my subconscious fears as a caregiver
- I encourage patients to self-advocate, but then I couldn’t do it myself