“Five Feet Apart” is a Dangerous Misrepresentation

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The trailer for “Five Feet Apart” was released on Friday.  Within a day, the Facebook clip alone has close to 4 million views.  Many people see that as a whole lot of great cystic fibrosis awareness. I challenge that.  Awareness that comes from misinformation is damaging.  There is an ethical responsibility when we are talking about the risk to human life.

In the Justin Baldoni directed film, two cystic fibrosis (CF) patients fall in love from a distance while in the hospital.  As a CF patient who has been hospitalized many times, my healthcare team has been devoted to never allowing me to come into contact with another CF patient.  Beyond my team’s devotion, they have a moral and ethical duty to provide the safest care. The World Health Organization states, “Patient safety is the absence of preventable harm to a patient during the process of health care and reduction of unnecessary harm.”  Exposing cystic fibrosis patients to deadly bacteria through cross-contamination, in the name of love, is a violation of the most fundamental principle of medical ethics — “Do No Harm.”  That’s the way it should be.  Person-to-person interaction between cystic fibrosis patients can lead to the transmission of CF pathogens that can adversely change the course of a patient’s life. There are lives at stake when it comes to infection control. This is not something I, or medical professionals, see as optional. 

The trailer shows the main characters touching each others’ medications and walking together with no masks. No responsible doctor or nurse would allow or promote this.

CFF.org infection control guidelines include:

  • Contact precautions for all CF patients regardless of pathogen status
  • Mask use by patients in common areas in health care settings
  • A minimum six-foot distance between patients

Cystic fibrosis clinics across the nation take these guidelines a step further by scheduling patients on different days based on the bacteria in their lungs, so there is no risk of us transmitting these pathogens by even touching the same door handle.

The guidelines have become even more stringent over the years as we painfully learned that the cost of not adhering to these guidelines resulted in CF lives lost.  

When I was a young child, before anyone knew about the dangers of cross-contamination, my mother hosted parties for families battling cystic fibrosis. She knew it would be comforting to have peer-to-peer support. As soon as the CF community learned about these dangers, those parties, camps, and support groups across the country came to an end. That has always been so sad for me, but I always understood the risk.

The social isolation is quite frankly one of the hardest parts about living with cystic fibrosis — once you get past the burden of the whole progressive, chronic illness thing 😉.  I hate abiding by these guidelines as much as anyone else.  I will never forget when I was a keynote speaker in 2008 at a CF fundraiser. There was a little girl there named Grace.  She was on the dance floor and waved to me.  I hugged her mom and we cried together.  All I wanted to do was hug Grace, but I couldn’t. I waved from across the room (this was before the CF Foundation released new guidelines in 2013 that allows only one person with CF at an indoor fundraising function).  I am still in touch with Grace and her mom — from a safe distance…online.  

Gunnar Esiason, another incredible cystic fibrosis advocate, the third brother I never wanted 🙃 is my close friend, but we have never met.  We are Rangers fans (and because he’ll call me out on this: he is diehard, I really just love watching hockey at Madison Square Garden). We have been to the same games, yet we still just wave from 700 feet apart.  Trust me, I’d love to grab a beer with Gunnar, but it isn’t worth risking both of our lives.  As public advocates for this illness, we understand how important it is for other patients to see how seriously we abide by infection control guidelines.  I deeply care about Gunnar and his well-being and when you deeply care about somebody you don’t want to risk their safety — their life.  Romanticizing the breaking of these guidelines in the name of young love, as this trailer does, is irresponsible. 

I voiced my concerns to Justin Baldoni on his Instagram post of the movie’s poster.  He responded arguing that he consulted with a CF patient and CF nurse throughout filming and he added that “this is a film and creative license is always necessary to tell a complete story in two hours.”  I argue infection control is a serious issue in the cystic fibrosis community.  It is not a topic that allows any room for “creative license.”  Moreover, there are plenty of more creative ways that cystic fibrosis could have been brought to the silver screen. 

Furthermore, Justin refers to us as “CFers.”  I take personal offense to this term.  While cystic fibrosis has certainly informed who we are, it is not our identity.  Psychologists share that our identity is linked to self-esteem which then informs our resilience.  Our sense of identity can influence our life experiences and success.  Though it may be popular to identify cystic fibrosis patients as “CFers” or  “cysters and fibros.” I believe it changes the way we perceive our own identity.  If we identify ourselves as the disease itself, it can negatively impact how we see ourselves and how we handle the obstacles we face due to cystic fibrosis.  

Let’s pause for a minute and try to find another illness that identifies its patients as the illness itself…we do not call those who have diabetes “diabetesers” or those battling muscular dystrophy “MDers” or cancer patients “cancers.” I find it offensive.  If you have cystic fibrosis, you should too. You are so much more than the battles you are fighting. You are strong.  You are not cystic fibrosis and you are not a CFer. You are you, with your unique gifts and talents. The identifier I would use for you is warrior. 

I feel compelled to write this op-ed because movies, movie stars, and the bright lights of Hollywood are hugely influential. The premise of the film and the trailer alone is a missed opportunity and dangerous misrepresentation of cystic fibrosis. The star of the film, Cole Sprouse, also stars in the widely popular television series, “Riverdale.”  He has 19.2 million followers.  That’s quite a bit of influence.  I imagine many young CF patients are massive fans of his. I fear they will see this film and begin to think to themselves, “Maybe the love of my life has CF…”  That thought is heartbreaking to me.  My hope is that cystic fibrosis fighters get to see a movie in the future and walk away thinking, “Wow, look at all I can do with my life, in spite of CF.”  If you are the parent of a young cystic fibrosis warrior, I hope you think twice about taking them or allowing them to see this film.  I don’t think the cystic fibrosis community should be grateful for or endorse a film that is this irresponsible in its depiction. 

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The only way I am allowed to step foot out of my hospital room: masked, gowned and gloved. (If you can’t tell by my expression, it’s annoying — but of the utmost importance) 

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Gunnar and I “together” at a Rangers Game. We take infection control seriously and we are able to have some fun with it 😉 

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It’s okay to be selfish

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I am back to blogging and I’m pretty excited about it!

I decided to join Team Boomer and run the Rutgers Unite Half Marathon on April 17th to raise money and awareness for cystic fibrosis through the Boomer Esiason Foundation. I know you have heard the “every dollar counts” thing a million times…and that’s because it’s true. So, check out my fundraising page! I challenge you to skip that Starbucks latte for a day and donate $5: http://www.firstgiving.com/fundraiser/julia-rae/2016-nj-half-marathon-at-rutgers-university

Truth be told, I have never been a big fan of running. So…why am I doing this?!

I ask myself the same thing every time I look at my weekly training schedule.

As much as I am running to help fund research to change the quality of the lives of CF fighters…

As much as I am running to one day celebrate a cure found…

As much as I am running for those CF patients that face a tougher battle…

I am also running this race for me.

Selfish as that may sound…

I am doing it for those “why me” days.

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One of those days…(my mom was super proud she braided my hair, but for once in my life, I did not want my photo taken)

Those days when I look at my friends wishing that, like them, I didn’t have to figure out how to fit in breathing treatments before going out

Those days when I just crave to know what it is like to not have to battle this chronic illness

I could go on…but this is not a pity blog, or a place where I want to foster negativity.

But those “why me” days are real and training for this half marathon makes me feel like I’m putting those days in their place — which is few and far between the days that I wake up feeling grateful and ready to hit the ground running (I heart puns!) to achieve my biggest goals.

Partnering with Novartis!

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I’m partnering with Novartis to share lessons I’ve learned from living with my condition on their Facebook page: on.fb.me/1rdzLA1. To learn how I cope, what inspires me and keeps me going, “like” their page and follow my posts. Would love to hear your dreams and what inspires you!

(I am being compensated by Novartis as part of this partnership. The opinions and content shared through this program are my own.) 🙂

Still have stairs to climb

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Thank you all so much for sharing the New York Daily News article!! The stair climb at Citi Field was a great success — it was incredible to see over 200 participants for the first climb! That is all thanks to the hard work of the wonderful people at the Cystic Fibrosis Foundation Greater New York Chapter and their dedicated volunteers.

Thanks to events like the climb and the generous supporters who donate their time, money and energy to finding a cure for cystic fibrosis, we have made major strides in the fight against CF. The lifespan has doubled over the past 30 years and equally as important, the quality of life of patients has improved. Yesterday, the Cystic Fibrosis Foundation received $3.3 billion from selling drug royalties. (You can read the CFF’s release here and the NY Times article here.) The trailblazing efforts of the CF Foundation resulted in this remarkable return on smart investments in cystic fibrosis research.

That number is huge and exciting. But, this is not the time to take a backseat on fundraising or donating. On Sunday at Citi Field, I met a girl my age climbing for her best friend who passed away in June from cystic fibrosis. We are still losing too many, far too young to this disease.

That’s why I speak out. Being so public about a very personal battle is a constant struggle for me. There are days when I want to close all the doors I have opened and quietly fight this. But I do it because I am able. I can, so I should. I owe it to the many patients waiting for their second double lung transplant, to those who were never able to realize their biggest dreams, to the young families that have to learn what cystic fibrosis is and how to face it.

So, while I hope this news can be celebrated, I hope you all will continue to join me in supporting the innovative efforts of the Cystic Fibrosis Foundation.

Meaningful May

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May is Cystic Fibrosis Awareness month.

May is for Miracles. (Children’s Miracle Network)

May is Miss New York month.

So, you may be hearing from me a lot throughout the next 31 days 😉

I was able to get a head-start on this Meaningful May on Wednesday when I went to New Brunswick, NJ to visit the cystic fibrosis clinic at Robert Wood Johnson University Hospital and its neighbor Children’s Specialized Hospital, a Children’s Miracle Network Hospital.

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Presenting Dr. Thomas Scanlin with a $3000 donation from Singing at the Top of My Lungs

Dr. Thomas Scanlin diagnosed me with cystic fibrosis (CF) before I was born. He has administered outstanding care for me over the past 21 years and I quite literally trust him with my life. So, I was absolutely thrilled to donate $3,000 from my foundation, Singing at the Top of My Lungs, to his CF clinic.  Dr. Scanlin expressed his appreciation for this donation which will help fund important research and clinical trials, as well as support families battling cystic fibrosis.  This donation would not have been possible without my foundation’s supporters and for you, I am forever grateful.

While I was in the neighborhood, I was able to stop by Children’s Specialized Hospital for an incredible tour with my friend Kaitlin Davis, their Children’s Miracle Network Program Manager.

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Touring Children’s Specialized with the lovely Kaitlin Davis 🙂

Children’s Specialized is our nation’s largest pediatric rehabilitation hospital with a typical patient stay lasting 3-6 weeks. I was so impressed with their commitment to family-centered care.  There are spacious family lounges with great views to give patients and their parents and siblings a change of scenery from their hospital room.  The floors have recreational rooms which are trauma-free and allow these young patients to escape their rehab therapies and just be kids. Children’s Specialized is a phenomenal representation of the quality of care given in our country’s Children’s Miracle Network Hospitals.

Last night, I hosted a Children’s Miracle Network fundraiser as Miss Metropolitan at Jasper’s Taphouse in Hell’s Kitchen.  With the help of my fabulous friends and several supportive strangers, I was able to kick-off “May is for Miracles” with a bang!

More coming your way very soon…

❤ Always

Julia Rae

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Cheers For the Kids! at Jasper’s Taphouse

No Breaks.

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I finally have a chance to sit down and write again thanks to Easter Break. It is really nice to come back to my family’s home and temporarily leave the stress of school work behind.

Everyone needs a break.

I feel for my friends in the workplace who no longer have this time off…Spring Breaks, Holiday Breaks and best of all, Summer. (Makes me want to stay in school forever!! Dont worry, Dad…I won’t!)  😀

But, as I was packing, I realized there is one stressful aspect of my life I can’t take a break from: cystic fibrosis.

The daily regimen (See video below) to keep my lungs healthy is all I have ever known. Waking up and doing a nebulizer and vest treatment is as much a part of my morning routine as brushing my teeth. Every single day of the past 21 years of my life I have done up to 2 hours of treatments to make breathing a little easier.

 

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This is my friend IV (pronounced Ivy) He is a 2 1/2 year old CF fighter and the next picture is his daily routine. IV has to take pills with every single meal to make sure he is absorbing all the nutrients from his food, all because of the havoc cystic fibrosis wreaks on his pancreas. Some CF patients take up to 60 pills a day.

Every day.

No Breaks.

Trust me, I have tried to take some time off from cystic fibrosis. For the first time in my life, I became quite lackadaisical with my daily routine when I moved to NYC in the Fall. I landed myself in the hospital for 2 weeks.  I learned my lesson.

No

Breaks.

That’s why this preventive care is so important.  That’s why research is so important. That’s why people like you who support cystic fibrosis research are so important. Research is not only “adding tomorrows” for cystic fibrosis patients. It is adding quality to our todays. So maybe someday, IV and I can take a break and

just breathe

Behind the Headshot

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Julia Rae

Last week I posted my headshot for Miss New York 2014, which has inspired this: my first venture into the blogosphere! This photo is all thanks to the genius of photographer, Claire Buffie, and the fabulous hair & makeup artist, Lindsey Zelli. (Because unlike Beyoncé, I do not wake up “Flawless.”)

Behind the makeup, great lighting and windblown hair is the real reason I decided to step back on stage and into the world of pageantry.

I am competing for the title of Miss New York 2014 with the goal of living up to another title I have been given —

cystic fibrosis advocate.

I have been speaking to raise money and awareness for cystic fibrosis for 7 years.  But for 7 years I have felt like I have only been scratching the surface…standing behind a microphone at events across America while still trying to keep my CF under wraps in certain aspects.  To be completely honest, it is scary terrifying for me to share my personal battle with a chronic lung disease, something I was used to keeping very private for the first 16 years of my life.

Now, I am ready to conquer that fear and jump in.

I feel that it is my personal responsibility to my friends with cystic fibrosis that are fighting for their lives, waiting for or recovering from double lung transplants and for those that face the frustrations of daily breathing treatments and numerous pills with every meal.  I am able to speak up and raise my voice for those facing a tougher battle than me and I am ready to rise to the challenge.

I hope you’ll follow my blog as I share more about living with cystic fibrosis and my efforts to amplify awareness through my quest for the crown.