This professor suffers from a mystery disease, so she developed an app to track its effects

Endometriosis gets very little U.S. federal funding for research, so Professor Noemie Elhadad developed the Phendo app to help women worldwide.
BY COURTNEY BIGGS
3/1/2019

An estimated 200 million women suffer from endometriosis worldwide. It’s a disease as common as diabetes, but it baffles the medical community. Doctors don’t know what causes it, or why it causes excruciating pain for some women and is asymptomatic in others.

Yet federal funding for researchers is scarce. In 2018, endometriosis received only$7 million of the National Institutes of Health’s $37.3 billion budget, less than a dollar per woman who suffers in the U.S. In 2019, that number is estimated to drop to $6 million. For context, anthrax research received $53 million in funding in 2018.

Noemie Elhadad, PhD, an associate professor of Biomedical Informatics at Columbia University, specializes in using computer science to draw insights from unconventional data sets such as doctors’ notes scribbled in patient files and patient comments in online forums. She cares about using ‘the power of the crowds’ to leverage large data sets while including the patient’s voice. She’s also an endometriosis patient, and like many others, she has found that her symptoms don’t align with what is currently represented in endometriosis research or even recognized by some medical professionals.

“For the longest time, I had pain in my legs and I always thought, ‘Oh it’s because I’m lazy, I don’t exercise enough.’ I’m a pretty health-literate person, but I never put two and two together and understood that this was in fact very periodic pain, and it was related to my endometriosis,” says Elhadad. “There is a disconnect between what doctors recognize as endometriosis symptoms, and what patients are actually experiencing day-to-day. Bridging this gap is critical to further research on endometriosis.”

This experience, coupled with frustration at the slow progress toward a cure, was the catalyst for Elhadad to launch her own research project, Citizen Endo, in 2016 at Columbia University.

Elhadad knew that with the limited research funding available, she would have to be innovative about how she collected data. She also knew that many endometriosis patients were already tracking their symptoms in menstrual health apps such as Clue, leaving a critical data source untapped by researchers or doctors. So with a $50,000 grant from the Endometriosis Foundation of America (EFA), Elhadad developed the Phendo app, available on both iOS and Android devices.

Once patients consent to the research study via the app, they can document medical history, symptoms, medications, supplements, energy levels, diet, treatments, moods, and pain levels on a daily basis.

As of January 2019, the Phendo app has over 6,000 participants in over 65 countries, making it the largest collection of clinical data about endometriosis in existence.

This rich data set will allow the Citizen Endo team to begin phenotyping endometriosis. A phenotype is a set of observable characteristics. While researchers have already found that there is more than one phenotype of endometriosis by looking at histological samples from surgically excised endometriosis lesions (pathology), they don’t know how many different phenotypes there are in the disease.

“Identifying these phenotypic subgroups will help us answer questions like why some women respond well to some treatments, why some are infertile, and why some see no relief in their symptoms after menopause,” Elhadad said.

While there is an element of unreliability with self-reported data, Elhadad says that the unprecedented high volume of data will allow her team to “build the right statistical models so we can deal with these limitations.”

Another unique aspect of the study is transparency. Research findings are published as Medium blogs, and participants can export their data to medical providers through the app. According to Elhadad, this also serves as their primary participant engagement technique and encourages dedicated reporting.

The Citizen Endo project appealed to the EFA because it supports their focus on awareness and early diagnosis, says Piraye Yurttas Beim, EFA board member and founder and CEO of Celmatix.

“It will help physicians understand that it’s not just about period pain, and that this is a real chronic condition. It is setting back women and is taking them out of the workforce and not allowing them to live rich lives,” said Yurttas Beim.

Citizen Endo is also open to collaborating with other researchers. They are co-recruiting with the genomic ROSE study at the Feinstein Institute in order to look at participants’ “qualitative day-to-day life with what’s going on in the genes expressed in their menstrual cycles,” said Elhadad.

After identifying a large number of participants reporting gastrointestinal symptoms, Citizen Endo will also partner with Ubiome in the future to send participants microbiome testing kits.

Elhadad hopes to apply the Citizen Endo model to other underfunded, underresearched areas of women’s health such as polycystic ovary syndrome. She is in the early stages of launching Even, a data-powered Women’s Health Research Initiative at Columbia University.

“There is clearly an issue across the world of women’s symptoms not being heard,” says Elhadad.

More such projects are sorely needed, says Yurttas Beim, who stressed the importance of investing in women’s health research.

“So what we’re learning now is that reproductive conditions like endometriosis are a canary in the coal mine for what women will experience later in her life – in a sense, by not spending on the earliest manifestations of heart disease, rheumatoid arthritis, and risk factors for cancer, which is what diseases like endometriosis are. We are putting money into reactive medicine and not proactive or preventative medicine.”

Some Women Go To Great Lengths For Relief From Debilitating Monthly Cramps
February 17, 2015 11:15 PM
By Lisa Sigell

(To see the video, click here).

LOS ANGELES (CBSLA.com) — For many women, mood swings and pain are a monthly ordeal, but in some cases, the cramping may be so severe women are taking drastic measures to find relief from the pain.
One such woman, who experienced cramps she described as mind-numbingly painful, was Leslie Valladares of Torrance, who searched to end years of suffering.

“I started having what I would assume were contractions,” Valladares recalls.

Valladares told CBS2’s Lisa Sigell she will be traveling 400 miles to Los Gatos to see the only doctor who’s been able to help her.

Valladares is a pediatric registered nurse but has been unable to find help closer to home.

For years, she says “Everybody’s basically telling me I’m not supposed to be in pain but I am.”

Valladares’ symptoms started at the age of 12. Every month, along with bleeding, she would experience excruciating pain.

Valladares says she saw one gynecologist after another about her painful periods and they would tell her, “Yes, mine is like that,” “Yup, it’s very painful,” or “We just have to all go through it.”

She says the message was clear: “Suck it up. Deal with it. We all do it. You can do it, too.”

“And I just thought something was wrong with me. Why can’t I handle this pain that everybody else seems to think is normal?” she asked.

It wasn’t normal and she wasn’t alone.

Valladares has endometriosis, or endo, a disease that affects one in eight women.

Andrew Cook, an endometriosis specialist in Los Gatos, is one of a handful of doctors nationwide who have devoted their careers to studying and treating the disease.

Endo, he says, “is tissue that’s similar to what we find inside the uterus. And it gets outside. It can grow through the bladder. It can grow in the liver. The diaphragm. And it can be horrendous.”

But it’s often hard to get help.

“Most physicians don’t get very much time in medical school being taught about it,” he explains.
Women can wind up stigmatized when they complain treatment doesn’t work.

Valladares had her first endo surgery in 2005 and three months later, the pain came back. When she told her previous doctor, she says: “He told me to look into fighting this pain medication addiction that he thought I had.” “It literally felt like he turned on me,” she said.

Cook explained: “Endometriosis tortures people. It doesn’t kill them, but there’s times you may wish it would kill you. It basically robs you from a normal life.”

Patients travel to Cook when all else fails.

“We deal with tough cases. On average, patients have been through three or four surgeries,” he explains.

His approach?

“I’m treating it with the same techniques as we would treat a cancer,” he said.

Surgeons typically burn away what they can see, and Cook says that isn’t always enough.

“You need to get around the lesion and cut it all out. If it’s not all removed, it’ll come back, just like if you don’t get all of the cancer out,” he said.

Cook’s meticulous surgical technique can take hours and isn’t cheap. Treatment can cost up to $10,000 out of pocket, but Valladares has no regrets.

“It almost feels like I woke up from this nightmare that I had for so long,” she said. “I feel like I’ve gotten this huge piece of my life back. I feel free.”

A telltale sign of endometriosis includes severe monthly cramping that gets worse as time progresses. Endometriosis can start in adolescence and can last beyond menopause. The condition is diagnosed via laparoscopic surgery. It is usually not detectible by ultrasound or other scans.

To learn more about endometriosis, click here. For information about Cook, click here or visit Amazon.com for more about a book he has written.
To find a list of endometriosis specialists, click here. To reach a support group via Facebook, click here.

This story was produced by CBS2 Medical Producer Gerri Shaftel Constant.

The Challenges of Living with Invisible Pain or Illness
The chronically ill and those who care for them often live in an invisible world
Post published by Toni Bernhard J.D. on Sep 28, 2011 in Turning Straw Into Gold.

Most of us who live day in and day out with chronic illness — which includes chronic pain — don’t look different from the healthy people all around us. I remember seeing tennis great, Venus Williams, on television, watching from the stands as her sister played in the U.S. Open tennis final. Williams had recently been diagnosed with Sjögren’s Syndrome, an autoimmune disease. The announcers were talking about her illness as the camera moved in for a close-up. As I watched, I was certain that most viewers would be thinking, “But she doesn’t look sick.” I’ve met a women online who suffers from Sjögren’s Syndrome, so I knew that Williams was facing a hard — and a largely invisible — struggle.

What are some of the consequences of living in the invisible world of the chronically ill?

Guilt and embarrassment. Being repeatedly told that we look and sound fine can lead us to think it’s our fault that we’re sick or in pain. We can be overcome with guilt, as if we’re failing those we care about, and we can feel embarrassed that we’re not living up to what we’ve convinced ourselves other people are expecting of us. The culture around us reinforces these feelings of guilt and embarrassment by sending the message that no one need be sick or in pain. We’re bombarded by news stories and advertisements telling us that we need only do this or do that in order to be healthy.

This expectation of health is especially hard on young people. Until I became chronically ill myself, I never realized how many young people struggle with their health. (I write about the extra difficulties they face in “The Extra Burdens Faced by Young People with Chronic Illness.”)

Having convinced ourselves that we’ve let them down, we may even feel guilty and embarrassed around our loved ones. I had to overcome the terrible guilt I felt over not being active in the lives of my two grandchildren. I had so many fantasies about what we’d be doing together. My oldest grandchild, Malia, lives in the city where I grew up — Los Angeles. I thought I’d be taking her to all my favorite places. My youngest grandchild, Cam, lives in Berkeley, only about an hour from where I live. I thought I’d be riding cable cars with her in San Francisco and going on Bay cruises that would take us right under the Golden Gate Bridge. Instead, I see her when my son’s family visits me in Davis.

When I finally realized that it was not my fault that I was sick, I was able to shed the guilty feeling that I was letting my granddaughters down. Once I did this, I was able to embrace my life as it is — sickness included. This freed me to look for ways to connect with Malia and Cam that didn’t include seeing them in person very often. 

Frustration at the lack of understanding.
The “list of misunderstandings” is a long one. I wrote about some of them in “Six Common Misconceptions about the Chronically Ill.” Here are four more, particularly related to the invisibility of our medical conditions.

Illness-related pain and debilitating fatigue are not cured by engaging in strenuous exercise, although I’ve read many accounts of doctors who have prescribed this very treatment. This lack of understanding from the medical community can have serious, even fatal, consequences because we may become gun-shy about seeing a doctor when a new symptom appears — one that could be a sign of a life-threatening medical problem, unrelated to our current illness.

Second, we may be treated as malingerers by family members, friends, employers, the medical profession, even the general public. After I was interviewed on a local National Public Radio show, I received an email from a listener, telling me that he didn’t want his tax dollars going to support “an amotivational slacker.” Whoa. I was confused: Did he mean I was an “amotivational slacker” as opposed to a “motivational slacker”? I’m making light of his comment now, but at the time I read it, it stung — badly. 

Third, people in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as “drug seekers” in emergency rooms and, as a result, are denied much-needed pain medication. 

Lastly, we face misunderstanding over what it means to be disabled. Just because we’re too sick to work and be active for extended periods doesn’t mean we can’t sometimes go out to a restaurant or have people over. This misunderstanding can have tragic consequences. I’ve read about people who’ve had their long-term disability payments revoked because an investigator who was sent to check up on them saw them being active in some way, perhaps going to the store.

***

I’ve learned that the burden is on those who are chronically ill to make the invisible visible to others. This entails educating people about chronic illness, although it’s good to remember that some people may never accept that we’re disabled by invisible pain or invisible illness. This inability on their part is about them, not us. They may not have had an experience with illness; it may scare them and remind them of their own mortality.

The kindest thing we can do for ourselves when people disappoint us is to accept that disappointments are an inevitable part of life and then cultivate compassion for ourselves over any suffering we’re experiencing as a result of their lack of understanding about what it’s like to live with invisible pain and with invisible illness.

© 2011 Toni Bernhard www.tonibernhard.com

You might also find this helpful: “A Not-To-Do List for the Chronically Ill.”

Thank you for reading my work. My upcoming book (Fall 2015) is titled How to Live Well with Chronic Pain and Illness: A Mindful Guide.

I’m active on Facebook, Pinterest, and Twitter.

Fellow endo sisters Laurie, Jenn, and Leigh have created a new in-person support group called the Ottawa Endometriosis Support Association!

From their website:

The OESA meets approximately once a month in a women only setting to offer support in a peer environment. We do not offer medical advice or act as a referral service for treatment. Our members meet to share their struggles and triumphs with a disease that often causes social isolation.

The members of the OESA acknowledge that our friends and family are also greatly impacted by their loved one’s struggles with endometriosis so from time to time we do host open events in a social setting where friends and family can feel comfortable to mingle and get to know other people who have had endometriosis touch their lives.

The OESA’s members are diverse in cultural and socioeconomic backgrounds, we strive to maintain a positive environment for our members and encourage them to stay informed and to advocate for themselves and their health care.

Please visit their site at http://www.ottawaendosupport.org/

Endometriosis sisters J and S posted a website on their social networking pages, which I want to share here.

The site is called  Fight Like A Girl, and was launched in April, 2010, according to the domain’s whois information, so it’s pretty new on the web. I like the site because it appeals to young women who are battling serious illnesses, including endometriosis. Some of the other illnesses covered on their site include cancer, diabetes, lupus, chronic fatigue syndrome, and fibromyalgia. There’s more, so check out the site today!

To quote directly from their website,

“The Fight Like A Girl Club was formed to provide a place where women battling cancer and other diseases, survivors, and loved ones can come together to share stories, experiences, hope, and encouragement with one another, a place where you can come to relax and devote time to yourself, a place where you feel accepted and cared about, a place to soothe your soul with meditations, poems, and inspirational quotes, to release your fears and anxieties through sharing and writing, to put your problems on the backburner while playing games and puzzles, to request Prayer from others who truly care, a place to CLAIM YOUR POWER!”

“Our mission is to provide a loving, safe, and nurturing environment where women battling cancer and other life-limiting diseases, survivors, and loved ones can come together to share stories, experiences, advice, encouragement, and hope with one another. Men are warmly welcomed, as well.”

“Our vision is that through sharing and connecting with one another, each of us will discover and claim the Power that is already within us.  Through cultivating and bringing together all of our ‘individual’ Power, we will create a ‘collective’ Power that will defeat cancer and disease once and for all.”

This morning I read a three-day old story on NPR, entitled “Patients Turn To Online Community For Help Healing“.

In that segment, three websites were plugged: Microsoft’s My Health Info, Google Health, and Patients Like Me.

I decided to check these sites out. I was thwarted immediately upon reaching Microsoft’s My Health Info page, because it wanted me to install Microsoft software called Silverlight (because they hate Adobe Flash for some reason). Nope, sorry, I won’t do it right now, thanks anyway.

Next, I checked out Google Health, and signed up. I shared the site with my female cousins who I suspect also have endometriosis. The site seemed alright at first…until I wanted to upload my medical files. Apparently I can’t just upload scanned documents – I have to go through some third party website, register there, and upload my medical documents there…or something. Another thing – while I can send email notifications to share my info with people, there doesn’t appear to be a forum or community to discuss my condition.
So I was not impressed with Google Health.

Lastly, I checked out Patients Like Me, and was thwarted at the sign-up page, because they do not have Endometriosis listed as a condition I can sign up to talk about!

Their website registration page has a sentence which reads, “Our current communities are for people with ALS/Motor Neuron Disease, Anxiety, Bipolar, Chronic Fatigue Syndrome, Depression, Epilepsy, Fibromyalgia, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson’s disease, and PTSD (Post-Traumatic Stress Disorder).”

I noticed the “Don’t see your condition? Request it here” link, and clicked through to fill out the request form to add endometriosis to their website.
Then I signed up on their site, anyway, choosing “Mood conditions (depression, anxiety, bipolar, OCD, PTSD, etc)” from the drop-down menu.
Endometriosis very often leaves me severely depressed, so it’s relevant.

So far, the Patients Like Me site seems like it’s doable. There’s a quick glance in chart format as to my mood and health, and there are forums for people to talk about their issues. You can search people with your same condition and find them in your geographical part of the world to really connect with.

Hopefully they’ll get that Endometriosis community going soon, because I really like the way they tie in symptom tracking and forum communities in one website!

In the meantime, for emotional support, check out the many sites I have listed on the right sidebar of this website, under “Online Support and Advice”.

For symptom tracking, check out the three sites listed in the left sidebar of this website, under “Symptom Tracking”. They are CureTogether.com, ReliefInSite.com and MyMonthlyCycles.com. I personally find ReliefInSite and MyMonthlyCycles the most helpful in tracking and more importantly sharing info about how endometriosis affects me, but CureTogether’s awesomeness comes in collating information from people who share their symptoms, and churning out reports and also a book to educate others! Register with one or all three if you wish!

Two days ago, I was told about another online support group out there, so I want to make mention of it – it is called MDJunction. It stands for “Making A Difference” Junction.

I joined today.

I belong to a number of online support groups for endometriosis, and I check in when I can. I hope to see you there!

A new endometriosis support group has sprung up in the Greater Boston, Massachusetts area. Please check them out at greaterboston_endo · MA!
This support group was formed under the Endometriosis Association’s blessing.