Producer Suzanne DeLaurentiis: Becoming a Visible Face for an Invisible Illness
Imagine that when you stand up, your heart rate soars above 150, your blood pressure drops, and you pass out.
Imagine that your digestive system malfunctions to a point that you can’t eat or digest any food without throwing up.
Imagine that you have horrible dizziness and imbalance for no apparent reason… your body has no control over it’s cooling system so you are constantly overheating and you have such severe anxiety you wonder how you are going to make it through the day.
This is what happened to producer, director, and philanthropist Suzanne DeLaurentiis four years ago. She had her life turn completely upside down by a rare disease called P.O.T.S. (Postural Orthostatic Tachycardia Syndrome) caused by dysautonomia, a malfunction of the nervous system.
“It’s so frustrating,” DeLaurentiis states. “There is nothing wrong with my heart. There is nothing wrong with my stomach. There is nothing wrong with my body temperature or my equilibrium… it’s just how my nervous system malfunctions and it can’t regulate these normal body functions.”
DeLaurentiis, who has been dubbed, “The Hardest Working Woman in Hollywood,” was known as the non-stop, constantly-in-motion redheaded producer always on the go. She was an athlete, a supporter and benefactor of Veteran’s charities, and always in various stages of production on multiple film projects.
“At fifty-six years old, I spend the majority of my life working morning, noon and night as a film producer,” DeLaurentiis recalls. “Four years ago, that all came to a screeching halt. I remember waking up in the middle of the night and having such severe dizziness that I couldn’t get my bearings. Over the next couple of months, I had an onset of strange symptoms… pounding heart rate when I stood up. I was exhausted all the time. I couldn’t even climb a set of stairs without being out of breath. I had horrible stomach problems and was so severely dehydrated from my body overheating, I was drinking almost a case of water a day and carrying around a face fan and a bag of ice because I was always burning up.”
She went to countless doctors who had a hard time determining the cause of her symptoms. She became so incapacitated that she left her Los Angeles residence and moved back to South Jersey where her family was from. She spent her summer bed-ridden and used the time to research her illness. She began to feel hopeless about her condition.
One day, her heart rate became so high, she was rushed to the emergency room. She was referred to a local semi-retired cardiologist who had a small practice in the neighborhood. He looked at her and said, “You have P.O.T.S.”
It was the first time that she had ever heard the term. She finally began to feel some kind of relief — at least this illness had a name. The solution-oriented DeLaurentiis told herself: “No worries. I’ll just get into the infamous Mayo clinic and I’m sure that there will be some sort of treatment that they could offer.”
To her surprise, the wait to schedule an intake appointment would take over a year and a half. Although many people aren’t familiar with P.O.T.S., there are an estimated 1–3 Americans who live with the disease but because of lack of awareness, most patients experience a four-year diagnostic delay. Thankfully, DeLaurentiis was able to be placed under the care of cardiologists at Cedars-Sinai who offered her hope including Dr. Bhatia, Dr. Simonini and Dr. Shah.
DeLaurentiis found that not only was there no known cure, or FDA approved drugs to treat P.O.T.S., but there was also no known treatment, only experimentation of several different off-label medications to manage her symptoms.
She says, “Most of them didn’t work and gave me horrible side effects. The only thing that gave me some relief was a brand new, off-label drug called, ‘Corlanor.’ It took me almost a year to get used to it, but it did help with keeping my heart rate down.”
DeLaurentiis was surprised to find that 85–90% of P.O.T.S. patients are female, mainly teenagers. “I was horrified,” she continues. “I can’t imagine having this at such a young age. It broke my heart reading stories that mothers had posted about their teenage kids who were committing suicide because they just couldn’t live with it…I had to say to myself, ‘Okay Suzanne, you are never going to be like who you were before. You won’t be you. You’ll just be a different version of you,’ and that was the mindset that I had to keep.”
Slowly but surely, she forced herself to get out of bed. “If I passed out, I passed out,” she decrees. “I would try it again the next day… I would force myself to eat, whether I could keep it down or not. I would drink literally a case of water a day. Little by little, I managed to get back up on my feet. Every day, I took a baby step and refused to give up.”
She credits her mindset and determination as a key factor in her healing: “Yes, there are days that are a struggle but in general, I’m pretty much back to living a normal life.” And you know what? It’s okay. Be strong. Accept how you are, where you are, and find the courage to keep moving forward.”
DeLaurentiis encourages others who are diagnosed with P.O.T.S./dysautonomia to continue doing research, find the right doctor who can help, and remember that “This too shall pass.”
These days, she is back on her feet, back at the gym, and back to work. She recently produced a suspense thriller called, “D-Railed,” coming out this spring. It has already won multiple awards on the film festival circuit. DeLaurentiis is again busy with a full slate of upcoming projects and she wouldn’t have it any other way.
She hopes to be an inspiration to those with a similar diagnosis to find the resolution and strength to continue. She concludes, “You will have better days ahead. You just have to believe.”
She welcomes those who need support to reach out to her at delaurentiisfilms@gmail.com and to follow her at @suzannedelaurentiis on Instagram.
Interview by: Giovannie Espiritu
