Braving the Storm: How Music and Family Helped Tara Get Through a Tough, Rare, Little-Known Disease

I know you’re fighting hard//I see your battle scars
    It’s clear you’ve come so far//You’ll grow stronger

Alone, these words may feel like just expressions of encouragement; a mantra for anyone going through a struggle. But for Tara Notrica of Merrick, NY, these words mean so much more.

These are just some of the lyrics of a song her daughter, Samantha, recorded – and which Tara co-wrote! It was inspired by Tara’s journey and battle with a rare disease. The song is called Brave the Storm – and in this instance, the “storm” is mast cell activation syndrome (MCAS).

MCAS is one type of mast cell activation disorder (MCAD), and is a rare,  immunological condition involving the skin, gastrointestinal, cardiovascular, respiratory, and neurologic systems. To learn more about it, click here.

In MCAS, mast cells excessively release chemical mediators, resulting in extreme sensitivities to a wide range of triggers – which in turn can bring on severe chronic symptoms that includes episodes of anaphylaxis .

Not a lot is known about MCAS, and in fact was only formally named in 2007 – a reality that has made Tara’s journey all the more difficult.
“I’ve been seen by hematologists, allergists, immunologists, cardiologists, dermatologists, endocrinologists, internists, rheumatologists, pulmonologists, neurologists…“rattles off Tara – pretty much a medical expert after the decade or so of medical visits. “I’d been misdiagnosed with RA, scleroderma, lupus, Lyme disease…at one point a doctor tried to diagnose me with Medically Unexplained Physical Symptoms (MUPS) and Severe Clinical Depression and referred me to a Neuropsychiatrist. That was by far the most offensive to me, as I was gravely ill at that point.”

For many – including the author of this article! – the thought of these many medical visits and diagnoses and exams seems daunting to the point of depression. But for Tara, it’s been a part of her life for so long, she seems to not dwell on the difficulty behind her.

In retrospect, she now realizes that the first indication of her MCAS was on a date night with her then-boyfriend, now-husband. What began as a romantic Italian dinner with a glass of wine (which now she concedes must have been the trigger) ended in an anaphylactic attack and a brief hospitalization.

“I had facial swelling, gastrointestinal symptoms , vomiting, constriction of airways – it was awful. After only one glass of wine!”

At the time – like most rare, underserved diseases – the attack was assumed to be something else; in this case, an isolated allergic reaction. She was sent home from the hospital after some IV Benadryl administration  and oxygen – and that was that.

Until the next attack. And the next one. And the one after that. The frequency became an issue she couldn’t ignore.
“These episodes would happen once a year. Then progressed to one every 6 months. Then one every six months; three months, every month – we didn’t know what was happening!”

By the time her second child – her daughter, Samantha – was born in 2004, these attacks were happening as frequent as three times a week.

“I was still being treated for ‘severe allergic reactions.’ This was not a severe allergic reaction.’ This was something else.
Rock bottom hit. Or has Tara puts it, “It was a complete downward spiral.”

Tara had lost all her hair – including her eyebrows and eyelashes. Her muscles ached at every turn. She barely found comfort in anything; laying on her bed felt like ‘sleeping on rocks.’ Everything became a trigger for her: Heat, the cold, perfumes, all foods, laundry detergent – pretty much anything would set off her symptoms.  She had lost 50 pounds (half of it muscle), and had to eat via a feeding tube.

“I was so weak, all I could do to get around was crawl. I had to crawl to the bathroom. Crawl to the toilet, crawl into the tub,” recalls Tara, citing that as her lowest point. “I felt like I was on the brink of death.”
After the litany of doctors and misdiagnoses and nearly a dozen of different hospitals – in and out of state – she was diagnosed with Mast Cell Activation Syndrome in 2011; in great part due to her husband’s efforts in finding the right doctor.

Getting that diagnosis was a turning point – but her road to recovery still isn’t complete. She’s on several medications and treatments – some on clinical trial – and in 2015 had an autologous stem cell transplant.

It was during this recovery that Tara became reacquainted with an old friend – music.
“I was in my isolation room, recovering, and the music therapist came in, sat down, and asked me who some of my favorite artists were, then played the guitar. It was just…so good for my soul. So joyful.

The hospital where Tara had her procedure offered patients music therapy sessions – and it was a godsend for Tara.

“Because I had such little contact with the outside world during my recovery, she was just so uplifting. Sometimes I’d sing a long, sometimes I would just listen – but it was always such a spiritual experience. Music has always been so important for me.”

The same can also be said for her daughter, Samantha; both of her children in fact.

“Samantha has been singing since  age 4 and involved in community and school theatre, plays the sax – my son Jared has been playing the trumpet since the 3rd grade.”

Samantha, inspired by her mother’s journey braving the storm, teamed up with her vocal coach and American Idol alum Robbie Rosen to write and record an original song, titled “Brave the Storm.”

For Tara – who helped write the song with Samantha and Robbie – it was a catharsis for the hell she’d been through – and the road that lies ahead.
“When we finished, when Robbie said  ‘We have a song!’ – we just looked at each other, in silence. And teary-eyed.”

And though the song has special meaning to Tara and Samantha – the truth is, anyone who has struggled can relate to the powerful lyrics and hopeful melody.

And hopeful is what Tara is.
“I think that it is imperative to stay positive, be optimistic, remain hopeful, be enthusiastic, stay educated, advocate for yourself, ask for help and never, ever give up. If you don’t like what you hear at a consultation, go for a second opinion or maybe even a third. Remember, you know your body best!”

Or it’s better to let Tara and Samantha’s words say it best:

 “Promise you’ll keep holding on// ’cause we can brave the storm.”

Please check out Tara and Samantha’s song on iTunes here.


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