Machelle Pecoraro lived two decades before knowing the name of the mysterious swelling disease that derailed too many of her days. She lost her father to the same illness when she was only 18 months old.
“When my own symptoms started at age 3, my mother was terrified,” she recently told a meeting of patient advocates.
Growing up, the outsized swelling could affect a hand, a foot, and worst of all, her face, making her an easy target for other children who gawked at her symptoms. It was swelling of the throat and airway that caused her father’s death at the age of 23.
She remembers years of doctor visits, “countless vials of blood, test after test, each one diagnosing me with something new – allergies, mental illness, possibly cancer.”
None of them were the real cause and nothing stopped the unpredictable swelling, triggered by unknown causes.
When Pecoraro was 21, her doctor referred her to yet another specialist, a new immunologist in town.
“I had zero time, zero desire and zero money to go to another doctor,” she said.
But this doctor would be the one who finally diagnosed her with hereditary angioedema. HAE is a rare disease that causes swelling episodes due to a defect that controls a blood protein called C-1 inhibitor. At her diagnosis, there was no approved treatment for HAE but it was no longer a mystery disease.
“It had a name,” Pecoraro said.
Her immunologist continued to follow her and even hired her to work in his office. She endured two difficult pregnancies to deliver two sons. Her first son did not have HAE but her second one did, igniting anger and guilt.
In time, Pecoraro began an approved treatment that has improved her health and decreased the hold HAE had on her everyday life. She’s now teaching her son how to manage HAE while doing fun stuff, like archery with both her boys, who are now 14 and 18. That’s her in the photograph below wearing arrows in her hair. What’s the most interesting thing about Machelle Pecoraro? We’ll let her answer that.
Age of diagnosis: 21
I’m proudest of: My boys. I had never planned to have children even though I always wanted them, due to the fear of passing HAE on to them. They are amazing boys. My life is better because of them. They are meant to be part of our world and I am thankful for God knowing more than I did and them being here.
Something most people don’t know/understand about archery: The most common thing I hear when talking about archery is “I could never do that.” All it takes is a little self-confidence, and a whole lot of courage, and anyone can shoot a bow. It doesn’t matter your strength or ability. The compound bow is designed to conform to you. It takes however much strength you have and compounds that into stored energy to fire the arrow as you release. Just like life, you can start low and, as you strengthen, so does your power. You can shoot from a wheelchair. You can shoot with one arm. I have seen people shoot with their feet.
Machelle Pecoraro wearing archery bows in her hair. Pecoraro manages her hereditary angioedema while making time for her passions, like archery.
Goal I’m striving toward now: Finally completing one of several books I have started over the years.
Best advice anyone ever gave me: Here’s what my stepdad/Dad said while I was lying on the floor, too sick to move, and I still didn’t know that what I had was HAE: “Life is hard and will listen to no excuses. You can either let this disease control you or you can figure out how to find a way to try and overcome it.”
Something I learned the hard way: He was right. Life accepts zero excuses. We all have to make the choice to pull up our bootstraps and try and try and try again. The longer you choose to stay down, the further you have to run to catch up.
Favorite artist/musician/movie:
Author Max Lucado who just somehow sees my soul and brings that to wonderfully beautiful words.
Musician: Casting Crowns, like Max they see the deepest part of me and put it to music. Both inspire me to be a better writer.
Movie: “Steel Magnolias” because it reminds me of my life. Life is hard and beautiful and funny and horrifically painful, sometimes all at the same time.
Something most people don’t know/understand about HAE: HAE is sometimes an unseen disease. Not all of the attacks are visible. It also is like a hurricane. You know it is there, powerful, just off in the distance and headed straight for you. We know the attack is coming and do our best to plan for it. The worst thing is trying to convince doctors that even though we might look normal now, that will change if intervention is not taken and taken quickly.
Most common question people ask about my illness:Why don’t you learn what triggers (angioedema attacks) and just not do it, or eat it or whatever? It is difficult to explain what the trigger or enemy is for me. My body just attacks itself. One (question) that makes me laugh is people, when they would see my hand or foot swelling, would ask “if I stick a pin in it will it just deflate like a balloon?” Really?
My advice to anyone who’s living with HAE: Never give up and never give in. You can overcome this and find a way to do all you ever dreamt possible. To find a way to live. It might be difficult. You might have to keep asking questions and learn to never take no for an answer. People won’t always understand that, but you are your own best advocate. Don’t stop. Keep your motivation forward facing until you find someone willing to listen.
My idea of the perfect day: I used to say that it was gauged by my disease. If I woke up alive with no face or throat swelling it was an amazing day. If I woke up with only a little swelling it was a good day. And if I woke up with zero swelling, it was a “make this as normal as possible but pay for it later” day. Now? That would be on a mountain somewhere with my boys and friends and family just breathing and being normal.
My most prized possession: I have two that come to mind. The first is an old antique Mason jar filled with shells. My grandmother always wanted to see the ocean, but unfortunately waited until her health prevented her from making the trip. People knew this and would collect shells for her whenever they would go to the beach. She kept these in a Mason jar and could pretty much remember who had given her which shell and where they came from. I have that jar and people close enough to know the story bring me back shells and I add them to hers.
The second is an antique glass tea pitcher. I was waiting for my car to be repaired once, and my step dad (Dad) walked around with me in this tiny little antique store out in the middle of nowhere. I found this tiny little glass pitcher sitting on the bottom shelf in the back corner. I said, “What is this little thing doing sitting down here, no one will see it.” I picked it up and I ran my finger around the edge and felt the reason for its bottom-shelf status, it was chipped.
My dad asked why I was standing and holding it for so long and I told him I would love to have it, but I was a new mom, my car was in the repair shop and I just couldn’t justify such a trivial purchase. It broke my heart to think of placing it back on that bottom shelf where I knew most people would see that chip as a flaw. I saw the chip and wondered how it became chipped. Was it when a new mom somewhere long ago poured fresh milk, still warm from the barn for breakfast for her young son? Or was it when she made hand-squeezed lemonade for her family working hard out on the farm? I loved that chip, that flaw, because in a way it reminded me of, well, me.
Life is hard and it causes chips and brokenness, but that is proof. Proof we have lived. I wiped away a tear and returned it to the bottom shelf and left. About a week later my Dad showed up at my house with a brown paper bag and said, “Here, I gotcha something.” He looked at me like I was crazy as I sobbed, unwrapping that tiny, wonderfully flawed little pitcher.
The most interesting thing about me is: I am an introverted extrovert. I almost never meet a stranger and find common ground with almost anyone, but I need down time, reflective time with just me and my thoughts and a computer keyboard for writing.
