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Awareness

Those affected or who know someone affected by preeclampsia headed to Heritage Park in Mount Sinai June 16 to raise awareness and funds for the rare but life-threatening pregnancy disorder. Photo by Kevin Redding

By Kevin Redding

Families and friends walked to raise awareness and funds to help put an end to a life-threatening pregnancy disorder.

Coram mom Jen DiSanza was 33 weeks pregnant with her second child in early 2016 when she started experiencing what felt like really bad heartburn, which she was told was a common symptom experienced at the end of pregnancy.

Coram resident Jen DiSanza, who was diagnosed with HELLP syndrome, a complication of preeclampsia, during her second pregnancy, hosted a Promise Walk for Preeclampsia to raise awareness to and fund for the disease. Photo by Kevin Redding

Even though a recent visit to the doctor had ensured her everything was going well, in a matter of days, she was vomiting, her blood pressure was up to 188/110 and her liver was shutting down while in labor seven weeks ahead of schedule at Stony Brook University Hospital.

“My liver enzymes were very high, my blood stopped clotting and my platelet count dropped — normal is around 200,000 and I was at 27,000,” DiSanza said. “I couldn’t even walk down the hallway in the hospital because if I stubbed my toe, I could internally bleed to death.”

She was soon diagnosed with HELLP syndrome, which is a complication of preeclampsia, an all-too-prevalent but widely overlooked pregnancy disorder that threatens the lives of mothers and their unborn babies. HEELP gets the acronym for hemolysis, elevated liver enzymes, low platelet count, which are all affected by the disorder.

There is currently no direct cause, which affects .2 to .6 percent of all pregnancies, which symptoms include headaches to swelling, according to the American Pregnancy Association. Women in the United States are at a higher risk for maternal death than women in 47 other countries, and about 4 to 12 percent of women diagnosed with preeclampsia develop HELLP syndrome.

Since giving birth to her perfectly healthy daughter, Elisandra, at midnight Feb. 4, 2016, DiSanza has bounced back from a post-birth health crisis and become an active volunteer with the nationwide Preeclampsia Foundation, an empowered community of patients and experts that aims to raise public awareness of the disorder and funds for research and a cure.

The foundation is a driving force behind two bipartisan bills currently trying to be passed in Congress that would support states in their efforts to identify a cause for the disorder and use their findings to improve healthcare quality and ultimately inform change.

Those affected or know someone affected by preeclampsia headed to Heritage Park in Mount Sinai June 16 to raise awareness and funds for the rare but life-threatening pregnancy disorder. Photo by Kevin Redding

DiSanza, with the support of several sponsors including Macaroni Kid and Eurofins NTD, organized the Promise Walk for Preeclampsia June 17, where dozens of local residents affected by the disorder in some way or another walked a mile and half around Heritage Park in Mount Sinai in support of disorder recognition and research.

A goal for donations to the foundation was set at $5,000, $3,000 of which was raised before the event even started. Gift certificates to local businesses were raffled off and a post-walk workout session was offered by Energy Fitness of Miller Place, where DiSanza works as an instructor. Face painting was available for kids.

“A lot of people aren’t aware of what preeclampsia actually is, and how serious it can be and how quickly it comes up,” DiSanza said to the small crowd before the walk began. “There’s a lot that women just don’t know to look for. Being here, and telling all your friends and family why we’re here, helps to share that message. [The foundation] sends out pamphlets to doctors’ offices and clinics around the country, they explain the warning signs and what to look for.”

Laura Moakley, a Seaford resident who helped DiSanza coordinate the event, and her 6-year-old daughter, Rowan, wore a pink shirt that read “Kick Preeclampsia to the Curb.” Moakley was diagnosed while 32 weeks pregnant with Rowan in 2011 after her midwife mistreated the signs.

Ray and Jen DiSanza with their two children. Elisandra, on left, was who Jen DiSanza was pregnant with when she was diagnosed with HELPP syndrome, a complication of preeclampsia. Photo by Kevin Redding

Feeling scared and uncertain of what awaited her, having been told she or her child could die in labor, Moakley had an emergency Cesarean section and woke up with a photo of Rowan next to her pillow. Her daughter spent 35 days in the Neonatal Intensive Care Unit.

“I felt robbed of a normal pregnancy … why didn’t I have the picture perfect pregnancy that our society needs to see? My goal was for no other woman to ever have to go through this,” Moakley said as a happy and healthy Rowan hugged her. “Awareness is key — we must continue forward with all of our work, our walks, changes in the medical community and even Congress.”

She eventually discovered the foundation online and found a network of women and men to talk to and get support from.

“I feel more connected … I feel like we’re not alone,” she said. “I feel like there’s a movement happening and there could be change in the future. I already see there’s more awareness and support … not just for women, but men, who are just as deeply affected by it also. There’s the stress of coming home without a baby or of having to take care of a premature baby.”

Ray DiSanza, whose wife Jen was who was diagnosed with HELLP syndrome, said more mothers need to be aware of the deadly disease and its all-too-common symptoms. Photo by Kevin Redding

DiSanza’s husband, Ray, could vouch for that stress.

“It was the single most horrifying experience of my life,” he recalled. “I didn’t know all that much about preeclampsia before it happened … it was a good thing that Jen did, because if we had both been as ignorant of it as I was, we might not be here today.”

Dr. Terrence Hallahan, of Eurofins Clinical Diagnostics in Melville, spoke of a recently developed test screening for early onset preeclampsia at the lab, which is the only one offering the test at the moment.

“It’s something near and dear to our hearts,” Hallahan said. “We now have the ability to test pregnant women in the first trimester, and determine which are most likely to develop early onset preeclampsia. Not only can we detect this, we can now prevent it. People need to know.”

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If you’re reading this on a cellphone somewhere, please stop. No, seriously. You can read it on your computer or in an actual copy of the paper but, please, stop reading this and look around you.

OK, are you back in your office or at your home?

It’s disturbing how often our cellphones become an escape from the here and now. I get it: We’re waiting in line to order a hamburger and we want to do something, so we plan our vacations or send text messages to our friends.

In the process, we’ve lost sight of what’s around us. It’s as if we’ve covered our eyes with electronic blinders and we can’t be bothered to pay attention to our surroundings.

I was recently driving through town and noticed a woman walking a large, chocolate Labrador along the sidewalk. His rear legs were pointed out as he walked. As I drove by, I noticed that the woman held the leash on her wrist as she was completely absorbed in her cellphone. Seconds later, the dog relieved himself on the sidewalk while trying to keep up with his oblivious owner. The dog looked uncomfortable as he tried to multitask.

I realize dogs are an enormous responsibility and that every time someone walks a dog, that person may not feel the urge to dedicate his or her complete attention to a conversation with the family pet.

“Hey, Tigger, look at that squirrel over there. Oh, wow, there’s a bunny. Do you see the bunny? Oh, wait, there are two bunnies.”

“What do you smell, Fifi? Was there another dog here a few hours ago and did he leave you a little scent present?”

We don’t have to connect with our pets every moment of every day. But wouldn’t it be nice if we were able to pay them some attention while we were out walking them? After all, how often do they come over to us when we’ve had a tough day, or give us their paw—or offer us companionship?

Everywhere we go, we have the opportunity to tune out the world around us and surf our way to somewhere else.

It’s thrilling to travel halfway around the world and send pictures instantly of a magnificent sunset, or the Eiffel Tower or a three-toed sloth. We can be connected to almost anyone almost anytime.

That shouldn’t give us license to disconnect from the people and the pets around us. It’s the economic concept of opportunity cost applied to our attention. The opportunity cost of paying attention to what’s on our phone is that we ignore our surroundings.

Remember those public service announcements which said, “It’s 10 o’clock, do you know where your children are?” Maybe we should have messages that pop up on our phone suggesting that “It’s 6 o’clock, do you know where you are,” or maybe, “It’s 6 o’clock, pick up your head and check out the here and now (or H&N).”

Maybe we should also develop an H&N logo we can put on clothing or notebooks. It can even become a verbal reminder to our companions.

“Class,” a teacher might say as she noticed her students taking furtive glances at their phones, “H&N, right? Let’s learn the material now, while you’re here.”

H&N may be a way of encouraging us to be where our bodies are at the moment, and not where the internet has taken us.

Dogs, meanwhile, shouldn’t have to multitask while they’re relieving themselves. If Fluffy could talk, she might say, “For goodness’ sake, H&N, I need a moment here.”

Tracey Budd poses for a photo with her son Kevin Norris, who died of a heroin overdose in 2012. Photo from Tracey Budd

Tracey Budd’s son died of a heroin overdose in September 2012.

One year later, Budd, of Rocky Point, was asked to speak at the North Shore Youth Council. Since then, she’s ended up on a public service announcement, “Not My Child,” that’s shown in high schools and middle schools along the North Shore, aiding her in becoming an advocate for drug abuse prevention and rehabilitation. She also teamed up with another mother, Debbie Longo, of Miller Place, and the two have become advocates for prevention and rehabilitation along the North Shore.

It is because of their hard work and dedication to this issue on Long Island that they are 2015 Times Beacon Record Newspapers People of the Year.

“I made the decision not to be ashamed of how he passed away,” Budd said about her son. “Just from speaking that one time at North Shore Youth Council, it was so very healing for me, and so many things have come from that and taken me in a direction that I never thought I’d be in, but it seems like it’s my calling.”

Janene Gentile, a drug and alcohol counselor and executive director of the North Shore Youth Council, helped work on that PSA.

“It was very powerful,” she said. “It was walking her through her grief. She has a lot of courage.”

Budd, who is also a member of Families in Support of Treatment, pulled together as much information as she could, and this past October created a Facebook page — North Shore Drug Awareness Advocates — pooling together families from Rocky Point, Miller Place, Mount Sinai and Shoreham-Wading River to spread the word about the rising concern over dangerous drugs, like heroin, growing in popularity across the Island.

“It just seemed that so many people were inboxing me and asking me for help,” she said. “I created the page so we could have a centralized area where we share information, and organize meetings where the group could all meet up. I also organized meetings once a month so we could to teach people about advocacy.”

Having a 12-year-old daughter, Cristina Dimou attended the meetings to begin to gather information on the issue. About one week ago, someone Dimou knows suffered an unexpected overdose, she said. She immediately reached out to Budd asking for guidance.

Debbie Longo speaks at a Dan’s Foundation for Recovery event. Photo from Facebook
Debbie Longo speaks at a Dan’s Foundation for Recovery event. Photo from Facebook

“She gave me three phone numbers telling me who to call for what and even gave me websites of rehabilitation centers,” Dimou said about Budd. “She checks up on me every day, asking me if I’m okay and what’s going on. I don’t know her personally, but she had a sense of urgency and a willingness to help. I think that speaks volumes.”

Legislator Sarah Anker (D-Mount Sinai) said with Budd’s outspokenness and Longo’s long-standing knowledge of the issue, they’ll be successful in their efforts.

“These women put their energy, their anger, their frustration, their sorrow into something that is helpful to the community,” she said. “I think they’re going to do amazing work.”

Longo has been involved in advocacy across the Island for the last five years, after her son suffered an overdose 10 years ago. Since then, her son has recovered, and currently lives in Del Ray, Florida as a director of marketing for a rehabilitation center called Insight to Recovery.

She said she found sending her son out of state helped him recover, because once he was done with his treatment, he wasn’t going back to seeing the same people he knew when he was using.

But she too has been involved in outreach and drug abuse prevention, aside from being to co-administrator of Budd’s Facebook page.

“I get a call just about every day from a parent saying they have a kid that’s addicted and they don’t know what to do,” she said. “We’re losing kids left and right. We’re losing a generation, is what we’re losing.”

Longo is a part of a 501(c)3 not-for-profit program, Steered Straight, which spreads prevention in schools. Recovered addict Michael DeLeon leads the program.

“You can hear a pin drop in the auditorium, that’s how dynamic of a speaker he is,” she said. “I can’t tell you how many kids come up to us at the end of the program and say, ‘I have a problem.’”

Longo was the chapter coordinator for New York State for a website called The Addict’s Mom, and is currently the head of Before the Petals Fall, Magnolia Addiction Support’s New York chapter. She is a 12-step yoga teacher to recovering addicts, and does post-traumatic stress disorder programs to help those dealing with grief.

After leaving nursing to go into medical marketing for hospitals, Longo said she thought she’d know where to turn when she found out her son was an addict, but said she really didn’t know what to do.

“There was such a bad stigma about addiction that you didn’t want to talk about it — you kind of suffered in silence,” she said. “If I was a nurse and had these contacts and didn’t know what to do, the average mother may have no idea. I’m trying to open the community up to what we have here on the North Shore.”

Tracey Budd holds a picture of her son, Kevin Norris, at a Walk for Hope event. Photo from Tracey Budd
Tracey Budd holds a picture of her son, Kevin Norris, at a Walk for Hope event. Photo from Tracey Budd

Longo has helped mothers like Sheila “Terry” Littler, of Rocky Point, whose son is a second-time recovering heroin addict. Currently, he is three months sober.

Knowing about treatment and where to get help, because it was something that started for her 13 years ago, Littler reached out to Longo for mental support.

“It was nice to have somebody else that’s gone through it to talk to, to know you’re not alone,” Littler said. “But at the same time, it’s sad that I’m not alone.”

When her son relapsed after being four and a half years sober, she reached out to Budd.

“It takes a lot of guts to come out in the open and do this and help people,” she said. “There are a lot of hurting people out there.”

She recently reached out to Longo about a friend of her son, who is a drug user, and the two were calling each other back and forth to find ways to overcome addiction.

“She cared to take the time to help me,” she said. “She spent a whole day doing that with me — that’s dedication right there.”

With the contacts Longo’s made with support centers and prevention agencies and Budd’s relationship with the county after creating the PSA, the two are teaming up to use their resources to form a coalition based on the Facebook page. It was also have the same name.

It’s in its early stages, but the hope is to help spread awareness about prevention through schools. As part of a coalition, Budd said, you can also apply for grants, which she hopes will help fund the spread of their advocacy.

“I felt Tracey was on the same path that I was on,” Longo said. “She is as tenacious as I am in what we’re trying to do.”

Longo said that she and Budd are trying to be vigilantes and have started Narcan training classes, like ones they’ve previously hosted in Miller Place and East Setauket, to continue to help fight the Island’s drug addiction problem. Narcan is a medication that stops opioid overdoses.

“I think together we’re a good team,” Budd said. “To me, you have a choice. You can either dig your head in the sand and be embarrassed that your child is an addict, or you can be proactive and say, ‘Enough of this, let’s help each other.’ When you speak to another parent that’s going through it, there’s a bond that you automatically create. In a way, I feel like my son is right there with me, helping these families. It’s very important to me, and I’m never going to stop doing it.”