The Lessons From My Endometriosis I Don't Want to Forget When I Feel Better

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If you’re anything like me, living with a chronic illness has completely reshaped your worldview. At times, I look back at my former self and think, How did I ever live that way? While I was in my darkest of my struggles battling endometriosis, I started keeping a journal. Mostly, it was for therapeutic purposes, but also so that I would never forget how I felt in certain moments of my journey. I didn’t want it to even be possible to unlearn the important things my illness has so graciously made me aware of.

Dear (almost) healthy self,

Though you may be doing well right now, I don’t want you to forget the lessons your chronic illness has taught you. Do you remember when you had days that were so horrible, you thought “I couldn’t possibly do this another day?” You proved that you are stronger than you even knew, and can face any challenge that life throws at you with confidence and determination. Those friends that went absent when you needed them the most? It is OK to accept that those relationships are not what you thought they were, and you deserve more than fair weather friends. Those friends that never left your side, fought your fights with you, and genuinely reached out to show their concern? Don’t ever let them go.

The judgment and lack of empathy that you feared and sometimes faced by people who couldn’t wrap their minds around the fact that illness can in fact be invisible? Please don’t ever judge someone else by your limited or biased world view. How about those nights that you wished you had someone to vent to about your frustrations without being responded to with the cliche “It could be worse?” Always acknowledge that a person is entitled to feel frustration in their situation, and lend them an ear to listen. There were many wonderful people you met through various forms of social media who hardly knew you, but understood you better than anyone in your life did because they’ve walked in your same shoes and selflessly gave you advice along the way. Please do not forget to pay it forward. You wouldn’t be where you are today without those people.

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Do you remember the moments when you put work deadlines before your self-care needs? Remember, that left you worse off than you were before. Your body should continue to be your temple that you take meticulous care of.

Then there were the times you were too busy for your friends and family. I urge you to continue to keep moments with these people as a priority, as these are the ones that truly count. Or what about the seemingly simple things you took for granted, like walking, eating and sleeping? The ability to do these things are a gift — don’t you ever forget that. Do you remember the days when your life was falling apart before your eyes? Look at you, you’re still here.

I urge you, as your life continues to blossom and evolve as you continue to recollect pieces of your former self you thought you’d forever lost, I beg you to keep these new pieces as well. You are forever changed, in the best possible way, because of them.

With love,

Your struggling self

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Citizen Endo Project Creates Phendo, a Period Tracker App for Women With Endometriosis

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Update: Phendo is now available for iPhones, and can be downloaded for free in the App Store. An Android version will be available in 2017. 

It took only two menstrual cycles for Noémie Elhadad to know something wasn’t right with her body. Growing up in a family of doctors and women with endometriosis, the then 13-year-old was soon diagnosed with the condition herself.

Now, 27 years later, Elhadad, Ph.D., a biomedical informatics professor at Columbia University in New York City, is using her professional and personal experience to revolutionize a type of app most women already have on their phones. The Citizen Endo project – a creation of Elhadad and her team at Columbia Medical Center – revolves around Phendo, a period tracking app that focuses on tracking pain, and citizen science.

Endometriosis, also known as “endo” by those familiar with the disease, is a chronic condition where tissue similar to the lining of the uterus is found outside the uterus. This tissue most often adheres to the outside of the reproductive organs but can also be found anywhere within the pelvic cavity including the bladder, bowel, peritoneum, as well as higher up on the intestines and diaphragm. Changes in hormone levels lead to an inflammatory response around the areas of endometriosis which can cause widespread pain in areas affected, as well as pain during intercourse, urination and/or bowel movements. It may also lead to infertility. Despite its prevalence – around one in 10 women have the condition – little is known about the disease.

“In a way, the fact that the disease has not been well studied is an opportunity here because the field is wide open,” Elhadad told The Mighty. “We can really do something.”

Despite the multitude of apps available, period trackers are far from one-size-fits-all. Today’s period trackers don’t really consider endometriosis, Elhadad said. Many trackers revolve around estimating fertility for the purpose of planning or avoiding pregnancy. While these analytics are important for many women, fertility-based trackers fail to recognize the large population of women who are infertile – many of whom rely on trackers as a way of monitoring conditions like endometriosis or polycystic ovarian syndrome (PCOS). For the 5 million women in America who have endometriosis and the 1.5 million who are infertile, these brightly designed apps with their fertility-inspired imagery often fall short of the community’s needs.

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Phendo, which stands for “phenotyping endo,” will be the first period tracker of its kind on the market. “[Endometriosis] is different from other diseases in the sense that it really affects everything in your daily life,” Elhadad said. Therefore, the Phendo app will allow each woman to customize its settings to best suit her pain and symptoms.

Building the Citizen Endo Team

It took Elhadad a while to commit herself to such a personal project. “It was not an easy decision, actually,” she said. “It came out of both opportunity – I have the skills and the expertise to do data science and mobile health and things like that – and just as a patient feeling an unmet need. We still don’t have enough descriptions of the disease that are directly connected to the patient experience.”

Along with Elhadad, the Citizen Endo team includes Mollie McKillop, M.S. in public health, M.A., a third year Ph.D. student and “endo advocate;” and Sylvia English, M.S., who, like Elhadad, has endometriosis.

“I got my first period at 13 and didn’t know there was anything wrong,” English said. “[At 15,] I was regularly passing out at school and couldn’t really stand up most of the time… I was officially diagnosed when I was 22 and have had three surgeries. I’m trying to use this experience to make things better for people somehow. ”

It’s no coincidence that two-thirds of the Citizen Endo team has endometriosis. “[Having endometriosis] changes our perspective and motivations as well,” Elhadad told The Mighty. “You’re motivated for yourself, but you also want to help as many women who experience something similar to what you’ve been through, to prevent other people from having to go through it again.”

The team has been consulting women with endometriosis since day one. “We’re making sure patient voices and women with endometriosis are actually heard while building this,” English said.

This idea of doctors and researchers listening is not typically a part of an endometriosis patient’s experience. “To me, that’s what sticks out about endo,” Elhadad said. “People get left behind and they don’t get heard.”

The team also works with three nurse scientists who specialize in self-management, health literacy and women’s health.

Creating an App for Researchers and Patients

The Phendo app, created using Apple’s ResearchKit and CareKit, is a pure research initiative financed by funding Elhadad receives as a researcher at Columbia Medical Center. Citizen Endo does not accept any commercial or pharmaceutical funding.

Phendo’s goal is three-pronged.

“One is understanding the disease,” Elhadad told The Mighty, “having a full account of the constellation of symptoms and signs that can happen with the disease.”

Once the app hits the market later this fall, Elhadad and her team hope to learn more about how the disease develops and changes. “We already know, thanks to all of the research that happened before, there is at least three subtypes of endometriosis and those have been found through surgery mostly,” Elhadad explained. “It’s endometrioma or superficial lesions of endometriosis or it’s deep-infiltrating endometriosis.”

Now the team wants to know how each subtype affects symptoms, and if there are more subtypes within each type.“There are some questions we don’t know how to answer yet,” Elhadad said. These questions include who develops infertility and why do some patients respond to treatments while others don’t. The app will hopefully find answers through clinical and surgical data as entered by the user.

“The next steps are really to have a set of biomarkers and digital markers for endometriosis,” she said. “So a lab test is a biomarker, but the way the number of steps you take today because of the terrible pain of your cycle, that’s also a marker of endometriosis.”

The second goal of the app is to help users determine and manage what triggers their pain as well as see how their symptoms have developed over time. “There’s this opportunity for each woman to make sense of her own data as well and to figure out what works and what doesn’t work,” Elhadad said.

Through tracking you can start to see bigger trends in the data. “You can start to see what works for you as an individual and what doesn’t,” English explained. “That’s important from the individual level, but it’s also really great to see [for example] there’s this cluster of women and they’re taking xyz drug and it makes their pain really bad three days later. What does that mean in the long-term and maybe they’ve got another trait we can look at that will signify there is something we can do to intervene.”

Lastly, Phendo strives to promote citizen science with the app’s users acting as patients and scientists. “In the design itself of the app there are mechanisms for women to say ‘I have this question about endometriosis,’ or ‘I think this worked for me, does it work for others,’” Elhadad told The Mighty. “So it’s not only your a citizen because you are donating your data, it’s because you are actually thinking about it and hopefully in an empowering way and not in a way that depresses you about your disease.”

Right now Elhadad and her team are finishing the design and beta testing the app with users. “My hope is by September or October we have a minimum viable product that can be tested at scale,” she said. The app will be available to anyone who has surgically been diagnosed with endometriosis as well as those who think they might have the condition but have yet to be diagnosed.

“We also have a selected set of subjects where we know what particular diagnosis they have and which phenotype they have so we can correlate that to the data,” said Elhadad. “We’re kind of running two studies at once, basically.”

Phendo already shows promise. “It’s been really fascinating to see there’s already a pattern happening between what’s going on in the morning versus what’s going on at night,” Elhadad said of tracking her own symptoms through the app. “I didn’t know, even though I’ve clearly been thinking about it for so long. So I’m even learning something from tracking it this way.”

You can visit the Citizen Endo website to learn more about Phendo and be notified when the app launches.

Photo Credit: Jordan Davidson

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What I Do to Prepare for Endometriosis Surgery

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I was diagnosed with endometriosis via an exploratory laparoscopy surgery in 2011. I then received a six-hour excision surgery in 2013 and recently started volunteering as a support group leader for Endometriosis UK. I am awaiting my third surgery, and remain hopeful that this will improve my symptoms. I am equally excited as I am nervous! 

Hopefully this will be my last surgery in a while (third time’s the charm!) but having been through this twice already, I have devised some useful lists which I thought I would share.

Before Surgery:

  • Research –Be sure to ask your doctor about any concerns. 
  • Make lists – Yes, I have added making lists to this list, but remaining organized can keep you from unnecessary stress.
  • Make practical arrangements – This includes informing your workplace, ensuring child/pet care, making sure someone can look after you during recovery, etc.
  • Socialize (if possible) — Many of my friends may not be able to come visit me during recovery so I am hoping to catch up with them before surgery, so I don’t succumb to cabin fever afterwards.
  • Prepare your skin – I often end up with skin infections around the wound. This time I have made sure to stop fake tanning well in advance (the thought of product buildup near a surgical wound has put me off!) and I am showering in antibacterial soap. 
  • Be healthy – Try to maintain as much of a healthy lifestyle as possible to aid recovery and reduce negative side effects of anesthetic. 
  • Arrange post-op meals – plenty of soft foods and prepped meals that can be quickly heated up.
  • Arrange post-op comforts – Stools softeners, painkillers, clean bedding, comfy PJs, big pants and possibly a bedside sick bowl.
  • Relax — This is easier said than done, but stress will not help your body in the long run. In the week running up to surgery I plan to do lots of yoga and book a facial.

During Surgery:

Essentials to Bring:

  • Dressing gown
  • Slippers
  • Phone and charger
  • Reading material — you may be waiting around
  • Any medications

Overnight Bag:

  • An outfit change — Things may get bloody.
  • Moisturizer — I use a tinted BB cream so I feel like I have some makeup on.
  • Lip balm
  • Body spray — This can be useful to cover up any embarrassing odors, but be considerate to your hospital roomies!
  • Toothbrush and toothpaste
  • Dry shampoo
  • Wet wipes — Bring ones that are safe to use on any body part, so there’s no need to bring separate face wipes.
  • Sanitary towels
  • And don’t forget to keep a cushion in the car, to go between your belly and seat belt for the ride home!
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After Surgery:

  • DVDs/Netflix subscription — Don’t do what I did and watch the entire “Orange is the New Black” series before surgery.
  • Antibacterial soap, to be used in place of regular shower gel
  • Herbal teas that help with digestion, relaxation and pain
  • Soft food
  • Stool softeners
  • A stool for the toilet — Raising the feet a little can take off added pressure. I just use an old shoe box.
  • A designated driver willing to run errands and take you to your doctor

I hope that helps! Please share your surgery tips!

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines. 

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14 Questions to Ask Yourself Before Promising to Love 'in Sickness and in Health'

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If you’re thinking about marriage — you may be engaged, talking about engagement or fanaticizing about marrying that beautiful person — whatever your status is, seriously ask yourself, are you really ready to say “I do?”

After writing a letter to my newly divorced self, I realized that at 20 years old, my fiancé might not have understood the commitment he was about to make. When he looked into my eyes, shaking with nerves and happiness as he said “I do,” he likely didn’t understand what “in sickness and health” meant. I was pretty healthy! I was studying full-time and had two jobs. Yes, he knew about my struggle with depression and had cared for me through many chest and sinus infections. Even though he knew all that when he put a ring on it, he was not prepared for chronic pain, endometriosis, and polycystic ovary syndrome. Who is?

bride writing on a table using a feather pen
Alexandra on her wedding day.

When we married in November 2010, we were both pretty healthy. Sadly, the chronic pain from endometriosis had well and truly set in during my January period. We’d barely been married two months, and his promise to love me in sickness and health was already put to the test.

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What does promising to love someone in sickness and health look like? Sure, you’re both healthy now. You can run, go for strolls on the beach, have a bowling date, have painless sex and ready to stick by your partner for better and worse. But…

Are you willing to take an income hit if they can’t work full time?

Are you willing to use days off to drive your partner to the doctor?

Are you willing to accept potential infertility?

Are you willing to see a marriage counselor to help you process the grief and changes together?

Are you willing to see a sex therapist, even if it is super embarrassing and awkward?

Are you willing to deal with your grief?

Are you willing suck up your pride, seek your own support and see a counselor yourself to help you accept, process and manage your own feelings of loss, disappointment, resentment, anger, bitterness and unfairness?

Are you willing to use your leave to help care for your partner if they need surgery?

Are you willing to watch the person you love the most in this world suffer physical and mental pain?

Are you willing to try new activities, ones that you can do together, things you wouldn’t have tried until your options were limited?

Are you willing to advocate for your partner when they have lost hope and when no one else will?

Are you willing to learn about the illness with your partner?

Are you willing to ask your friends and family for personal support?

Are you going to choose to love that person, even if you hate the illness?

You never know how you will react in a situation until you’re in it. But if you can’t answer yes to many of these questions, maybe it’s something to ponder.

The Mighty is asking the following: What do you want your past, current or future partner to know about being with someone with your disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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To the Daughter My Endometriosis Might Never Let Me Have

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Once again, I’m in pain. I sit here, filled with medication with hopes that one day I will be able to hold you in my arms. Just once I would like to see your smile, smell the scent of baby lotion on your skin, and watch you as you slowly close your eyes and begin to dream. Month after month, I go through weeks of pain and anguish just to cling on to hope that you one day will appear.

Your mother has a reproductive disorder that has plagued her for over a decade that prevents you from being with her in this world. She has gone to rounds of doctors, lost money from her savings, and done multiple surgeries just for the hopes that you will someday be with her. This disease is the major barrier between the two of us being together.

Your mother has a chronic disorder that most doctors admit to having a lack of understanding. A disease that a small number of women secretly walk around with each day and nobody knows the pain they are in.

It’s called endometriosis.

One in 10 women in the U.S. have this chronic disorder, and your mother is one of them. The best way to explain it is a growth of abnormal tissue outside the cocoon that should hold you for nine months. It is like scar tissue, and it can travel anywhere in my body. The worst part is the mass can’t move because it can’t be shed like other tissue once a month in a woman’s uterus. It can be in places like on the outer uterine wall, around the bowel or bladder, and even around a woman’s diaphragm, joints or heart.

The pain is tremendous for me. It makes me run to the bathroom to vomit in pain, fall when walking because my legs radiate with discomfort, and it can make the simple task at work a major challenge. I cry at least once a month in agony in secret due to its complications. Sometimes I weep when I wake up, or at my desk at work, or while driving in the car when I have to pull over because of the pain.

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It starts a couple of days before my menstrual cycle officially begins. During the early stages, my ovaries will start to pound. Next comes the lower back pain. It will hurt so much I struggle to stand at times, and this is before even starting my cycle. I lose sleep and pile up pillows to try and find comfort. I take powerful pills just to make it through the work day once my period arrives. Despite taking the medication, the pain increases. I bleed heavy, and I can’t control what happens with my body.

I waste money on items to help the discomfort month after month. I get massages to loosen up muscles, sneak heating patches underneath my clothing, and keeping an extra outfit at work in case there is an accident. I fight all of these things just because I want to see your face.

Many surgeries have happened. The first time that they did a scope in my body, they told me they didn’t see anything and that the pain was my imagination. I switched doctors after having the second surgery.

The next doctor was a specialist, and he listened to me. He nodded his head that something was wrong. He was the first to find the patches of endometriosis in the spots I complained about in another surgery. I was right. There was endometriosis on the very back of my uterus, and it is hard to discover. It was near my spine. This doctor was the one who told me there was no cure and that it would come back. While he showed me the pictures from the surgery and the negative diagnosis that endometriosis would haunt me for many years to come, I thought about you again.

Would I ever get to hold you?

I became so desperate for relief that I agreed to take shots once a month so I wouldn’t bleed for a while and could prolong my time before another endometriosis attack would begin. The medicine in the shots was just as bad as endometriosis, but if that was what it would take to hold you possibly in my arms, I had to do it.

A year later the pain returned, and I saw a third doctor for yet another surgery. This surgery had an assistant known as da Vinci, which is a robot, and it would be doing a lot of the work in trying to make it possible for me to have you. They strapped down both of my arms and tilted me upside down on the operating table. The robot could see better than human eyes and could take away endometriosis easier if it was back again. The robot would do almost all the work.

When I woke up, I found out it was back.

It had spread.

It was worse than last time.

It had spread to other organs in my body.

They took it out for me to feel better, but remember, there is no cure.

It would be back.

Time has passed since robot da Vinci worked on me, and I am back to feeling like I did before. The plan is one more round of shots when things become unbearable. After the shots, if things don’t get better, they are going to take away all the things that could make me be your mommy in my body. When times get tough, I close my eyes and dream of you.

I imagine your first steps, the lack of sleep for both of us when you begin teething, and hearing the word “Mama” come from your lips. I wonder what your favorite book will be, the songs I will hear you howling out from the shower when getting ready for school, and how loudly I would cheer with your first achievement. Will I ever see you looking like a princess for prom? Have verbal battles with you over curfew, your first love and grades? Will I ever get to wave goodbye to you as you enter your dorm room for college, salute you when you leave to protect your country or start your career to save others in a troubled world?

Sadly, none of these events may occur.

Just know that I will never stop thinking of having you in my life. I will continue to work on being the role model I would want my daughter to see: a professional dedicated toward educating other’s children, a woman who works hard for everything that she gets, a warrior who fights every day against a disease that has no cure. Sweetheart, I’m a fighter against anything that could be a force against us, because to give in means to lose sight of your face.

There are times I don’t feel as if I have the strength to fight anymore. As the doctors have said, my time is running out with my health and my age. There are times when I weep that I can’t have what others do. I feel anguish when I go to coworkers’ baby showers, and I feel empty the second Sunday of May of each passing year. I take the time to feel sorry for myself that I might never hold you, but I can’t wallow in pity. Feeling helpless solves nothing. I embrace the lonely moments, shed my tears, and then focus once again on you. The easy way out of this situation is to have the “final” surgery and to think just of my relief.

I won’t do that.

I can’t do that.

I fight for you and you alone.

Each medication they inject in my body, each pill that has poisoned my system, each frightening visit to the doctor to hear nerve-wrenching results, and each surgery for a disorder that will come back time and time again to try to make give in, is for you.

You are worth every part of it.

We should be together.

You are my driving force to fight against this condition. If we meet, I promise to be the best mother ever to walk on God’s earth. Even if I have just to dream of you, know that I will always love you.

Forever thinking of you,

Your mother

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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The Exclusive Clubs I'm a Member of as a Woman With Chronic Illness

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I received some snail mail yesterday — an actual letter of the fun kind. It was such a joy to find it in my letter box, open and read it! A dear friend, a sister in Christ and chronic illness sent it from Sydney. We bonded during my gluten-, dairy- and soy-free diet trial; she was such an encouragement and had wealth of knowledge to make it a bit easier. When I opened the letter, I found “Chronic Illness Achievement” magnets. I was reminded that despite the pain, fatigue and head spins, I got out of bed, was kind and gentle with myself and I survived the day! It’s made this current trifecta of a flare up just a little bit easier.

supportive chronic illness magnets
Alexandra’s “Chronic Illness Achievement” magnets

There are so many things about having an illness that is so hard, sucky and unfair. Yesterday I was reminded of one of the blessings — the community, solidarity, friendship and mutual support that can only come from shared experiences. It sucks that we have to go through the trials that we do, but at least we aren’t alone. Sometimes I feel like I’m a member of some exclusive clubs:

When you can relate to people who also feel alone and misunderstood, no words can describe the relief and gratitude. While I was attending pain clinic, I made some beautiful friends whose lives had been impacted in a similar way to me. One of the most significant and helpful parts of the program were these relationships. I participated in a 12-step program where I found mutual support and understanding from others with mental illness. I made more more progress after 12 months of mutual help than I did with six years of one on one therapy. And last month I organized a meet-up with three other women who have endometriosis and live in Brisbane — we spent nearly three hours sharing our struggles and most of that time we were in laughter as we told our horror stories that no one else understands. Some of my closest friendships grew because we share pain, emotional and physical and had experienced the life-altering impacts it had on our lives.

I need to thank a zillion people for being on my support team — but this is my thank you to the many friends who have been able to encourage and support me as we have learnt to live with chronic illnesses. Thank you for being honest and vulnerable. Thank you for sharing and listening. Thank you for supporting me and letting me help you. Thank you for showing me I wasn’t alone when my feelings were telling me otherwise. Thank you for praying with me and for me. Thank you for your kind words and genuinely checking in when you were barely functioning yourself. Thank you for teaching me self-care and compassion. Thank you for pointing me to Jesus so that I could rely on God, rather than my weaknesses. Thank you for being a mirror so that I could see reality more clearly.

Remember, we are not alone and to believe that you are completely isolated is a lie from the enemy. You have me and have millions of others who, even though their individual experiences may be different, understand. They want to support you the way others have supported them and social media has made connecting and networking with people so much easier — especially the days you struggle to get out of bed!

My prayer is that you will find the courage, energy, and spoons needed to meet others who “get it” and are also trying to manage their illnesses one step at a time. Feel free to send me a message — I’m an extrovert, so I love conversations and if I’m not well enough to chat today, I will tomorrow.

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…and even though we may not be able to physically dance like the Wildcats, we’re all in this together.

Follow this journey on Breaking Stigma.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? Check out our Submit a Story page for more about our submission guidelines.

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