My sister, Mimi, and I both live with porphyria, a rare disease that can cause debilitating attacks and require significant medical care. For me, porphyria can mean severe abdominal pain, nausea, body aches, and a range of other symptoms that can make everyday life difficult. Mimi experiences many of…
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My heart is so full, as is my head! Just a few weeks have passed since we held Porphyria Palooza, a gathering organized by the United Porphyrias Association (UPA), where I serve as president. This year’s event brought together patients and caregivers of every type of porphyria, as…
What would you do in a zombie apocalypse? The answers might vary, but they usually look something like this: Stock up on food and water. Gather family and friends. Find shelter. Figure out how to defend yourself. But when you have a chronic or rare illness like porphyria…
“Princesses Behaving Badly: Real Stories from History Without the Fairy-Tale Endings” by Linda Rodriguez McRobbie is a pop culture history book. It isn’t a medical or scientific book. So how on earth could it save my sister’s life? The book is about the lives of women throughout history who were…
I’m usually good at keeping secrets, but the surprises coming up at Porphyria Palooza have me bursting to share everything. Just ask my husband, our three sons, and anyone on the team at the United Porphyrias Association (UPA), where I serve as president. They’ve all watched me struggle to…
Even with the sweetest cat, it’s impossible to forget they’re in the bed next to you. You can go to bed perfectly comfortable, hoping you’re in for an ordinary night. Your cat is curled up and purring softly beside you, but you can’t completely relax, because you’re always aware of…
A friend recently sent me a grainy image taken 10 years ago at Camp Sundown, a camp for children with rare diseases that make sunlight dangerous and painful. In the photo, my friend and I are sitting on top of a car with a few other moms. Back then, we…
Lately, there has been more attention directed my way than I am entirely comfortable with. Recently, it came after my team shared behind-the-scenes photos from filming a segment for the morning television show “The Balancing Act” in the office of the United Porphyrias Association (UPA), where I serve…
My work is both personal and professional for me. That is one of the beautiful and complicated gifts of rare disease advocacy. I do this work as the president of the United Porphyrias Association (UPA). I also do it as Brady’s mom. And that little boy, my “baby,” who…
“You can tell everything you need to know about a man by the way he shakes your hand. Eye contact and a firm grip show trust and respect. You can count on that person.” I have held on to my dad’s advice for 27 years now, and while I’ve found…
Recent Posts
- Finding a balance when you’re both the patient and the caregiver
- Sun-safe camp builds confidence in young patients with rare porphyrias
- Porphyria Palooza was an educational and uplifting family reunion
- Experimental EPP therapy increases pain-free time in light in trial
- I wouldn’t survive a zombie apocalypse as someone with chronic illness
- Prolonged AIP treatment helps woman recover after severe attack
- Preventive treatment cut attack risk in small acute porphyria trial
- How a random book led to a porphyria diagnosis that saved my sister’s life
- Seasonal bias may alter how EPP patients recall their symptoms