May We Admire You: SugarTool

A chat with Kirthika Parmeswaran, the CEO of SugarTool, a neonatal health app.

May We Admire You is our column in which we shine a spotlight on someone we think is pretty kick-ass. Our goal is to honor the accomplishments of a person, company, or group we respect and to expose their awesomeness to the world.


Frida Oskarsdottir spoke to Kirthika Parmeswaran, CEO of SugarTool, an app in development focused on neonatal health that was recently a finalist in the Penn Center for Innovations AppItUp competition. Kirthika and her all-women team of physicians envision a future where new mothers are empowered with medical knowledge about their newborns, and as a result, their babies are healthier.

Frida: So tell me more about SugarTool.

Kirthika: SugarTool is an evidence-based, digital health app focused on the screening and treatment of low blood sugar conditions in newborn babies, called neonatal hypoglycemia. One in three babies in the United States is actually at risk for this condition, and it’s a growing risk. There are a few reasons; the baby could be pre-term or born to a mother who is diabetic or has gestational diabetes. A newborn brain is dependent largely on glucose, and at birth, the regulation of glucose is very sluggish. An adverse effect of this is that it can lead to seizures or even brain damage. Our goal is also to shine a light on all these issues.

Frida: Before founding this company, were you involved in the medical field?

Kirthika: Actually, my background is in telecommunications. I began my career in research and development and did a lot of work in emerging technologies, but I got intrigued by this notion of bringing new ideas to market. I got a degree in technology management, which got me more into the business side of tech.

Most recently I became involved with the Penn Center for Innovation (PCI), which is part of the University of Pennsylvania. PCI’s goal is to incubate the technology. The way it works is that there are “founders,” who are subject matter experts. In our case, the founders are physicians working at the Children’s Hospital of Philadelphia. PCI matches founders with folks with business and product development expertise, like me. So I came in as a CEO with the aim of taking it to market.

Frida: Where are you at now in the process of bringing SugarTool to the market?

Kirthika: This is a really early stage, actually! SugarTool was formed through PCI’s AppItUp competition earlier this year. Out of 300 entries, we were chosen along with five other applicants in the end. Right now, we’ve just begun doing pitches, looking at other sources of funding, and talking to people throughout the eco-system.

Frida: What do you think it takes to get chosen out of 300 competitors?

Kirthika: In this case it was the problem we’re tackling. It has to be something unique and something that brings true value. The reason I joined this company was firstly that I was a gestational diabetic mother during one of my pregnancies, and I had no clue what to do, because I wasn’t from the medical field. I want to be in the position that I can empower other moms and other people with this problem.

It’s unique in the technology field because we see a lot about driverless cars, artificial intelligence. If you see medicine, it’s focused on oncology. But often people aren’t focusing on something as fundamental as newborn care. It’s a niche problem with enough challenges that it’s made for an exciting and interesting topic to get into.

Frida: In terms of the logistics of using the app, is this something to be used by new mothers and clinicians, or just one or the other?

Kirthika: That’s a big part of our offering. First, we’ll have a risk assessment for babies for certain conditions, including neonatal hypoglycemia. Secondly, there will be a cognitive, or machine learning, aspect. To answer your question, the third aspect brings together the nurses and doctors at the hospital, the pediatrician, and the mother or caregiver. Malpractice suits have come from babies not being screened properly before discharge, then being rushed to the ER later. We want to bring an integrated view across these different people.

Frida: What would you say you spend your time doing in the role of CEO?

Kirthika: Definitely being a product evangelist. It has to come from passion, you have to be clear, and you have to be able to drive the product. I’m talking to so many different people all the time! Then there’s product management, looking at the market, positioning, how to build a profitable business. The founders and I don’t want to be limited to the United States, we want this to be global. There are countries where mothers cannot even reach hospitals, and as a mobile app, SugarTool could be a form of global outreach.

Frida: Is it quite unique to have a start-up team that’s all women?

Kirthika: That is one thing that we are very proud of! In this case, a lot of us are mothers and we have this inclination to do better for other mothers. I think there should be many more all-women teams and I’m sure there are a lot that we don’t even know about.

Will You Still Love Me When I’m Loopy?

My family and I share a genetic predisposition to Alzheimer’s Disease.

By Gabrielle Sierra

My family has always made light of our genetic predisposition to Alzheimer’s Disease. Our jokes run the gamut from socially acceptable to completely inappropriate.

Sometimes we dabble in light ribbing in order to relieve tension, like when someone forgets a name or retells a story. “Get ready!” we will sing-song to our partners or family members or friends, alluding to some inexplicably hilarious distant future in which we have no memory at all.

Other times we skew darker, like when we laugh about that time my great-grandmother accidentally used Lestoil (a multi-purpose cleaner) to bake a large batch of cookies and my grandmother had to run around to all the neighbors and collect them. Or how in my grandmother’s later years she couldn’t tell any of her daughters or granddaughters apart so she called us all Barbara.

It sounds bleak, I know, and maybe a little cruel, and maybe we should think twice before taking this hit comedy routine on the road. But Alzheimer’s Disease has no cure, and most scientists believe that those who have a family member with the disease are at a higher risk of developing it. The risk level goes up even further when more than one person in your family has had the disease.

My grandmother had it, my great-grandmother had it and my great-uncle had it. The math isn’t promising.

Of course, I am not alone in having a family member (or three) suffer from this affliction, as Alzheimer’s is the most common form of dementia. A progressive disease, it affects the brain, and grows more and more destructive over time. Alzheimer’s is associated with memory loss, but the disease is much more overarching in its destruction, causing the sufferer to lose the ability to understand visual images or to make clear judgements or even complete simple daily tasks. Many Alzheimer’s patients experience sudden changes in their mood and can become fearful, anxious or even violent.

There are seven stages to Alzheimer’s, and the final stage is terminal. This may include the patient losing their ability to swallow. But unlike some diseases, this final stage isn’t always reached swiftly. My grandmother started showing signs of Alzheimer’s around the age of 75 and only just passed away last year at the age of 96. For nearly a decade her body was healthy and strong, so it was a struggle to understand that what was happening to her was all in her brain.

While Alzheimer’s has no cure, in some cases a test of the Apolipoprotein E gene can tell patients whether or not they have an increased risk. Many doctors encourage those who may be genetically predisposed to the disease to have these tests done, but with no way to slow or prevent the development of Alzheimer’s, many (like my mother and aunts), choose to skip the test in favor of a future that is uncertain but still optimistic.

A silver lining, though a muted one, is that my family members who suffered from Alzheimer’s succumbed to the late-onset variety. This is the more common form of the disease; less than 10 percent of Alzheimer’s sufferers develop the early-onset form. Late-onset means the disease doesn’t really start surfacing until the individual is in their mid-sixties or older, which sounds far better than beginning to lose your memory at age 30. But in this modern world, where the average lifespan for an American man is 76.5 and 82.1 for an American woman, this information can be of little comfort.

For a family of academics, voracious readers, and quick-witted banter-lovers, losing control of your senses, memories, and abilities can seem worse than death. It is incredibly difficult to see a bright flame slowly extinguished, and even harder to realize that, at least for a while, the individual knows what is happening to them.

As a family unit we remain hopeful that a cure or at least a treatment will be developed within our lifetimes; new drugs are being developed and new studies are being published all the time. My mother and aunts allowed researchers to learn from their mother’s decline and even donated her brain after she died. We participate in the annual Alzheimer’s walks and raise money for what we can.

But more often than not, we laugh. We ask those close to us, “will you still love me when I’m loopy?” with a light tone that carries a bit of fear. We take photographs, we tell stories, and we write things down. We read and read and read. We make jokes in the doctor’s office, we make jokes over dinner, and we make jokes on the phone. Even while gathered next to my grandmother’s bedside as she died, we laughed. We cried, we told stories, and we laughed.

We laugh because we are strong and funny and full of life, and maybe a little cruel. We intend to face the future with a grin.

 

How I Googled My Way Into An IUD

After the 2016 U.S. election, I, along with many others with uteruses, searched online for long-acting contraception.

By Monica Torres

After President Donald Trump was elected, I cursed, cried, and typed three letters into my search browser: IUD. I was beginning a months-long journey that would end with me in medical stirrups, naked from the waist down, squeezing a silicone boob in stress, as an intrauterine device, or IUD, was inserted in me.

I was not alone in this journey. Immediately after November 8, the top Google search terms for contraception were “iud,” “iud Trump” and “get an iud now,” according to ABC News. After President Trump was elected, the idea of birth control that can work for over a decade by just sitting in your uterus spiked in popularity. In an uncertain future, people with uteruses wanted to take control of their reproductive choices. Around this time Planned Parenthood also reported it saw a 900% increase in patients wanting IUDs.

Before I could commit to a decision, I turned, as I usually do with my private concerns and neuroses, to the internet. I found Subreddits, Tumblrs, and Livejournal communities dedicated to all-things-IUD and I lurked in these spaces for months.

The more-recent IUD evangelism stems from all the benefits of long-acting reversible contraception. Beyond the gift of years-long contraception for zero effort, they’re low-maintenance and cost-effective. While pills, rings, and patches have a 9% failure rate, IUDs are over 99% effective because they don’t rely on you remembering to take something, at a certain hour, every day or month. Because the hormones in IUDs are localized in your uterus and not your bloodstream, my doctor even promised me that the mood swings that the Nuvaring gave me would disappear. It’s no wonder then that IUDs are the preferred contraception of choice for gynecologists to use on themselves.

And in the long-run, IUDs are cheaper that most other forms of birth control. The Affordable Care Act requires insurance plans to cover all government-approved methods of birth control without out-of-pockets costs. Under this mandate, an IUD is free under many insurance plans. If the ACA is repealed, an IUD could cost up to $1000. This may become a reality —President Trump has vowed to repeal the ACA and Republicans are desperately trying to fulfill this promise. So far, the administration has already cut $213.6 million in teen birth control research.

Even having science and doctors on the side of IUDs, what drove me to action was this last point. What initially had held me back from seriously considering an IUDfear of pain in the procedure, complacency, inertianow seemed silly. I made a commitment to myself. Once I turned 26 and lost my father’s health insurance and used my employer’s, I would celebrate this adult milestone with an IUD.

But first, I wanted to know the people whose forces I would be joining. I wanted a space where strangers would stop being polite and start getting real about the IUD side effects, like potential months of bloody discharge.

I found all that and more. In these online forums, there were success stories, testimonies to the limits of pain endurance, complaints of hormonal side effects, and pleas for advice. As each of the IUD communities is quick to emphasize, they are not a substitute for your healthcare provider. They are your space to support and vent. Unlike face-to-face interactions, on social media posts like these, you always have the mic, and can speak uninterrupted. This can be freeing for people to unburden themselves of big and small worries they’re unable to tell their lovers and families. Snaps of solidarity and applause are seen in the replies, reblogs, and upvotes your story receives.

What’s better is that there are referees. The moderators of IUD_Divas, an IUD livejournal community that’s been running since 1997, enforce a rule around pronouns. “Our users come from all over the world, get IUDs for myriad reasons, have different medical coverage situations, and vary in relationship status, sexual orientation and gender identity,” the moderators advise in their submission guidelines. “Say ‘people,’ ‘iud users,’ even ‘iud divas’ instead of ‘ladies’ or ‘girls.’ Don’t assume that everyone’s here to prevent babies, or that we’re all from your country.”  

In other words, speak your truths, but recognize that you can get your mic unplugged.

We make our private parts public knowledge because we seek answers we’re not getting from our known circles. For some IUD seekers, these online spaces may be giving them better advice than they’re getting offline.

“Through moderating this community, we have come to realize that many healthcare professionals prescribing birth control do not offer adequate education to their patients about possible side effects and how to use birth control most effectively,” the moderators of /r/ birthcontrol, who are a medical student and a lawyer in the daytime, told me in a message. We hope that this community serves the purpose of allowing patients to educate each other in a friendly and non-judgmental manner.”

Here, your pain is believed. Advice is taken seriously. Misery over jammed IUDs is shared. Whatever happens, you’re not alone. There are never enough public spaces for people to talk about their imperfect bodies, full of irregular bleeding and unwanted pain, and have them be recognized and celebrated as valid.

Each time I wanted to back out, I would read these stories, and I would watch healthcare legislation battles on the Senate floor. I eventually chose the newest IUD approved by the Federal Drug Administration, Kyleena, that is slightly smaller than Mirena, has fewer hormones19.5 mg of levonorgestrel vs. Mirena’s 52 mgand lasts just as long five years.

Bolstered by science, the looming threat of Trumpcare, and the stories of many IUD divas behind me, I turned 26 in May and booked an appointment for the middle of July.

***


When the day finally came, the wait was longer than the procedure itself. My doctor’s office only had one room equipped for IUD insertions. My appointment was delayed for over an hour because insertions were taking too long. At least that’s what I was told. But when you’re the only person sitting in a waiting area, you hear too much. The woman before me fainted getting her old IUD out and her new one in. The woman before the woman who fainted got sent home because she was too nervous and kept bucking away from the doctor’s hands. I overheard one nurse tell another that it would take a while to “clean up the mess.”

Foreboding! I did not want to check my heart rate on my watch because I could already feel it pounding in my ears. When it was my turn to enter the room of horrors, I undressed from the waist-down and toured my cell. Someone had tastefully covered the medieval scissors that would be used to cut my IUD strings with a paper towel. There was a footlong box that carried the insertion device that would soon be in me. It looks like this.

Despite knowing all the ways this procedure could go wrong, the months of online reconnaissance had left me at peace with my decision. I had read all the timelines that could happen. At best, I would be like the lucky woman who said the pain was so minimal she could’ve “gone back to work.” At worst, I would black out from pain or be sent home because my uterus was too small to fit an IUD. All my fates were laid bare before me.

The physician assistant’s advice to me was to bear down and not move. If I moved, the doctor may need to reinsert the device. The threat of having to go through the insertion process twice was enough to make my body go still.

The physician assistant would be too busy helping the doctor to hold my hand, so she gave me a silicone boob to squeeze my anxiety into. During the insertion, there are three obstacles your body needs to overcome to reach birth control Valhalla. After your clinician disinfects your vagina, they will put an instrument up your cervix to stabilize it for the insertion. This is where the pain comes in: your cervix is the gatekeeper to your uterus and will attempt to expel this foreign invader. It will helpfully alert you to this intruder through an intense, sustained cramp that reverberates from your core. “Out, damn’d spot! out,” it protests. The next moment of rebellion comes when an instrument reaches your uterus to measure its depth. Your queen uterus is unhappy with this action and will tell you so. The cramping insurrection continues. If your uterus is big enough, your reward will be the third moment of pain when the IUD gets released into your uterus. This all happens in less than a minute.

Theoretically I had known this, but the cramping still made me suck my breath through my teeth in shock. I crushed the silicone boob in my hand, but I did not faint. The IUD successfully went inside me. The experience was better than the “molly sweats” of dizziness one woman described, but worse than the vague possibility of “discomfort” the Kyleena pamphlet undersold. The closest parallel of pain I found was with the woman who recorded her IUD insertion for a podcast. Her strained ‘hah haaaaahhhhhhh’ of discomfort was me.

After conquering the IUD, I downed the painkiller the nurse gave me, shook myself off and hobbled to the subway like a newborn deer. My cyborg body was still attempting to expel this foreign object and adjust to its new reality.

Following the advice of Redditors, IUD_Divas, and my doctor, I had made an end-of-day appointment and had cleared the rest of my schedule for the day. A heating pad, my favorite takeout, and Motrin awaited me at home. Whatever you do, my advice is to take it easy and treat yourself tenderly afterwards. You deserve it. The next day, I woke up with minimal pain, five years of continuous, foolproof birth control, and a sense of deep satisfaction.

I had finally become the IUD diva, a Redditor “experience” story tag that I had read so much about. The billed procedure would be over $800.00 but thanks to health insurance, I would pay nothing. I would never need to wait in line at the pharmacy for birth control again. I was bleeding on a pad. I couldn’t wait to tell people on the internet about it.


A Friendship Interrupted: Loss During the AIDS Epidemic

A story about loving and losing a best friend during the AIDS epidemic in New York City.

As told to Gabrielle Sierra by her mother, Samantha

 

I first met David Poole in 1975. I was 23 and he was 25 and we were both working at the New York Public Library. He sought me out as a friend and I don’t really know why; it felt like we lived in different worlds. He was an openly gay man living in a fifth-floor walkup in the East Village, with a bathtub in the kitchen. I was a Brooklyn hippie commuting to the city every day, balancing work with night classes in community college. But David and I became fast friends and he brought me into his world.

There was so much about David that was unique. He biked everywhere and was brazen too; if a taxi cut him off he’d spit on it. It was David who first brought me to a sushi restaurant and introduced me to clubs like Paradise Garage where we would dance until dawn. He was a great dancer and knew everyone. In fact, it was a friend of his who introduced me to the man I would eventually marry.

David was a true-blue friend and utterly unselfish in his relationship with me. I’d never had a friend like that before and never have again.

David had a tremendous love for exotic plants and he sacrificed a room in his two-room apartment just to grow orchids. He had a complicated lighting and misting system that would go off on a timer. Depending on which one went on, he would either hand you sunglasses or an umbrella. Geckos ran loose in the apartment to eat roaches.

David was a true-blue friend and utterly unselfish in his relationship with me. I’d never had a friend like that before and never have again.

He first had suspicions that he had AIDS in 1985. Many of his friends were being diagnosed and he was right in the thick of the community. There was a lot of promiscuity and drug use; David wasn’t monogamous so the possibility was real. There were so many lies and misinformation surrounding the disease so it was hard to know what to believe. People believed you could get it from spit on the ground, from someone handling your food or touching the poles on the subway. There was a lot of fear.

At first David wouldn’t go to the doctor. He developed oral thrush and even though it really freaked him out he stayed in denial. But as more and more people around him started dying he grew consumed with the idea that he had AIDS. He was eventually diagnosed in 1986.

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David and Samantha


The doctor didn’t flat out tell him he had AIDS; they wouldn’t say it then. They listed ailments related to the disease but never said the actual word AIDS. After that he started to go downhill fast. He grew weaker. The library asked him to resign from his job.

A few of David’s friends and I began a desperate hunt for AZT, a medication used to treat HIV/AIDS. We contacted the Gay Men’s Health Crisis (GMHC) and they directed us to a doctor who would prescribe the medication but it wasn’t available at any pharmacy. We would be told it was on order and to come back tomorrow only to be told the same thing the next day. I went to different pharmacies, all over the city, every day, for nearly a month. They knew he was dying, knew so many people were dying, and they still lead us on. Tomorrow, tomorrow, tomorrow. He didn’t get the AZT until he was too sick.

“They knew he was dying, knew so many people were dying, and they still lead us on.”

We tried to take him to the hospital but they wouldn’t admit him. Multiple doctors literally turned their backs to us. We contacted the GMHC again and they told us the only way to get David into the hospital was to bring him to the emergency room and walk away, because legally they had to take him if he was abandoned and in need of care. Walking away, leaving him all alone and so fragile, was the hardest thing I have ever done.

Once he was admitted, it was the same story. No physician would state that he had AIDS, they would only discuss what was happening to him. Eventually I cornered his doctor in the stairwell and asked him to just tell me off the record if it was AIDS. He said yes and I broke down. I guess I had just been holding on to this scrap of hope that since they never said it, it wasn’t real.

While David was in the hospital I found out that I was pregnant. I was going to the city every day to visit him at the hospital and I had no intention of changing that pattern. People gave me shit about exposing the fetus to AIDS and said that my stress would affect the pregnancy. Their concern was fueled by their ignorance and fear. Most of his friends didn’t visit him for the same reasons.

Before David was admitted, my husband and I had purchased tickets to visit my in-laws in Puerto Rico. As the trip got closer, I became more and more hesitant about going. But eventually two close friends of ours agreed to stay with him in the hospital, so we left. I called frequently.

His struggle with AIDS didn’t end in death.

We were just a few days into our trip when I grew concerned about David’s mental and physical state. Each time we spoke on the phone, he seemed more and more confused, repeating his fears to me, forgetting things. The disease was spreading to his brain and he was deteriorating quickly. I decided we had to go home right away. We bought tickets and I called to let David know I was coming. Our friends answered and said he wasn’t talking anymore. I asked them to put the phone to his ear and I told him I was on my way home and that we’d be back so soon. By the time we landed at the airport David was gone. He was 36. I didn’t get to see him again, I didn’t get to say goodbye.

His struggle with AIDS didn’t end in death. We couldn’t bury him. We went to multiple funeral homes only to be turned away. We would argue or offer more money but they would still refuse. When we asked how they could deny us, they said that by law they could refuse us service. It was surreal and devastating.  

Thank goodness for the GMHC. They instructed us to go to a certain place to cremate him, but then no one would take his ashes. Cemetery owners were terrified to put him in the ground. My lovely best friend.

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David, the author, and her dog Max

David’s life of kindness, easy friendship and love of nature helped us find an answer. He had been close with the groundskeeper for the Quaker cemetery in Prospect Park, a nice guy who used to let him come in and garden. When he heard that we couldn’t find a place for David’s ashes, he came to the rescue. The groundskeeper and I drove out to New Jersey and picked a tree we thought David would love. Then we illegally dug a hole for the tree and his ashes in the hidden idyllic cemetery. The tree is still there. It is amazing looking – a huge tree, beautiful and blue. We had a small ceremony there and a couple of us spoke.

I miscarried the baby very shortly after David died. People blamed it on the stress and all that, but I never thought about it that way. It was just the way things happen.

I was the executor for David’s will and he had a ton of odd and interesting stuff. We donated his plants to the Brooklyn Botanic Gardens and divided the rest of his things among friends and various charitable organizations. One day my husband and I were packing up at David’s apartment and we began searching for the geckos to take home with us. We knew there were four but since they were all loose, we were struggling to find them. We finally found three but it just seemed like the fourth was gone. I was extremely upset and I kept apologizing saying, “I’m sorry David, I’m sorry we couldn’t find him.” I was despondent when my husband said my name and pointed as the last gecko found his way onto my shoulder.

I have tried my best to honor David the place he had in my life. In the 1990’s I made a section on The AIDS Memorial Quilt for David and traveled with The Names Project around the country. I protested when children were being kept out of public schools due to AIDS. Through my job I now work with LGBT organizations and am an organizing member of a Safe Zone for all faculty and students at my school. I am proud to say my own children are liberal-minded and sensitive and thoughtful; what I went through with David had a hand in the way I raised them.

My wonderful friend will never be able to enrich the lives of my children as I know he would have.

But the panic I saw in people’s eyes and their actions during that time struck me in a deeply profound way. To see those sworn to protect the public turn their backs on us. To know that if some people had their way they would have left David and the rest of the gay community on an island to weed itself out was heartbreaking. It was murder. My wonderful friend will never be able to enrich the lives of my children as I know he would have.

I don’t think I’ll ever lose my fear and dread: not of Ebola or terrorism or threats to our planet, but the capacity of hate we humans can muster when we are afraid.