Ski for MG: Stowe Derby 2014


Yesterday I skied a 20k race called the ‘Stowe Derby’ – a cross-country ski race that starts at the top of Vermont’s tallest peak, snakes down a ‘green circle’ (easy) ski run, passes through a nordic ski center, and finishes on a bike path down in the town of Stowe. It was my first year doing the race, and I decided to raise money through my participation for my autoimmune disease, Myasthenia Gravis. I was very inspired by a number of MG patients I met at last year’s annual conference; many of them have raised money for our disease, mostly through organized events called ‘MG walks.’ MG walks are thusly named because many Myasthenics have a hard time walking for long periods; so walking for a cure is a symbolic way for people to support the cause. I’m fortunate not to have any problems walking, so I decided to use this race as an excuse to raise money while pushing my limits a bit (this was my first XC race ever, and by far the longest distance I’ve ever skied.)

Here is my pre-race interview:

Then I got on the chairlift in my skinny skis:

It was a warm day, and the sun beat down on the motley group of skiers gathered at the top of Stowe mountain – many appeared to be experts and were clad in sleek, stretchy race suits. Another man had a rubber horse head mask on along with jeans, and yet another had some sort of glittery knickers (American usage of the word.) They started us in groups of 5, so that pile-up crashes around the turns would be minimized.

Once they set us free, I flew down the winding ski run on my skinny cross-country skis, tucking along all of the straightaways, gathering speed and passing a few people and getting passed. I stood up and slid around each turn, wobbling here and there but never falling. I waved, smiled and hooted ‘woo’ at the spectators who were gathered around the most harrowing curves to watch the inevitable sloppy falls. I didn’t give them what they wanted – in a race known for its extravagant spills, somehow I kept myself on my two skis for the entire race (thanks, Dad, for starting me skiing early!) I felt in my element, exhilarated, and refreshed.

After saying hello to my husband and friend Laura at the bottom of the downhill ski area, I headed into the Stowe nordic center trails.  The trails were rolling, with some fun short downhills and a few absolutely brutal uphills. I wheezed and pushed through this section of the race, and came to one last, long, tunnel-like downhill in the woods. I was skiing behind 4 or 5 people. Suddenly, almost all at once, they all shot off the trail and fell into the soft snow on the left and right. I’m not sure what happened, or if this was some kind of flash mob, but I made it past them.

Soon after I saw Nick and Laura again for a water-up, as I moved into the long, flat section of the race:

On the flats, I spent almost the entire time alone. I got into a steady routine and finally had some time to think. I coasted past old barns, a half-frozen river, soft white snowy fields. I felt the air fill my lungs, and I thought of my friends who have MG breathing crises and have to be hospitalized. There’s a lot of dysfunction in my body, but yesterday I celebrated everything that is still so amazingly functional. My nerves and muscles worked in sync to propel me forward. My inflamed joints stayed quiet, at least for awhile. My guts had been angry earlier in the day, but they cooperated during the race. I dedicated body parts to my MG and e-patient friends – my joints to Britt, Alan, Emily…my toes to Jess…my lungs to Laura…my heart and blood vessels to Sarah…my two working legs to Joe…my muscular strength to my MG brethren who couldn’t have participated in this race. My eyes were strong – no double vision, no droopiness. I silently thanked my neurologist and herbalist who helped me get to this point.

I appreciated this time to focus my thoughts and energy for a few minutes on the patients (MG and otherwise) who have inspired me over the past two years. It made crossing the finish line feel like more of a meaningful accomplishment.

Photo Feb 23, 13 57 36

My biggest thanks go to my husband Nick and friend Laura, who supported me today, and to all of the very generous people who donated to my race and are enabling me to give over $1600 to the Myasthenia Gravis Foundation of America. I’m so proud to be able to give a substantial amount of money to a cause that can have a direct, positive impact on patients like me, and I’ve been overwhelmed with the outpouring of support from my friends and family. What a great day.

I testified.

Last week, I had the opportunity to testify before the Green Mountain Care Board, a Vermont state institution tasked with ‘ensuring that changes in the health system improve quality while stabilizing costs.’ I spoke briefly about a proposed policy change that would make it simpler for patients to give consent to all of their care providers who want to access their electronic health record via the VT state health information exchange (VHIE). I wrote down my comments and submitted them, and I thought I’d include them here (embellished a little bit after the fact):

2/13/14 Green Mountain Care Board comments – Consent Policy change

I’m Katie McCurdy. I’m a patient and user experience designer, and I live in Burlington. I’m speaking today both as a chronic patient and as a designer who spends a fair amount of time studying systems and human behavior. I’m speaking in favor of the global consent policy change.

As a patient, I have experienced negative consequences when information was not immediately available to my providers at the time when they need it.

Example 1: A few years ago I was in a position of seeing multiple providers – a number of specialists and a primary care doctor – in an attempt to get a diagnosis. These providers all used different EMR systems. I ended up having the same exact same bloodwork done multiple times, in multiple locations, within a very short time period.

Example 2: When I moved to a new city, I had to have new diagnostic testing done because the previous results weren’t readily available. I had to pay more money and had to have a somewhat upsetting test re-performed, because it was easier to re-do the test rather than jump through the hoops to get my records sent.

Example 3: I traveled last year to see a few specialists. In order to try to minimize duplicate testing, I carried around all of my results in this heavy binder. I was *the* expert in my health history, Johnny on the spot with my results. But that burden was on me. And I am a very atypical patient – most patients do not carry around huge binders of their records, and they shouldn’t have to.

What I have experienced is similar to what many other patients have experienced: when there exists friction in a system making it at all difficult to access prior records or records from other systems, providers are going to do the most efficient thing – which is often to simply reorder the test or procedure instead of jumping through hoops to obtain it. This results in waste and contributes to the high cost of healthcare. By removing much of this friction through this consent policy change, we simplify the experience for patients and give providers access to the information they need, when they need it.

If I’m going to see a new doctor in Vermont, and I make an appointment with that doctor, I don’t want to fill in 37 intake forms. I don’t want to have to provide individual consent forms for each provider I see in VT. I don’t do that at Fletcher Allen – when I make a new appointment with doctor in that system, they can automatically see my history. That’s the magic and promise of health information exchanges; that information can flow freely through the system and that it is conveniently, immediately available to care providers.

As a designer looking at this from a product standpoint: I know that most people don’t want to have to heavily customize a product. They just don’t have time. People like things that ‘work’ out of the box. We have the opportunity here to offer a system that ‘just works’ and that is simple and efficient for patients.

Finally, I did have comments about the suggestion from the ACLU that care providers should have to ‘click a checkbox’ every time they access a patient record. As a designer who works on websites and apps, many of these containing highly sensitive and personal health information, I understand the underlying need to ensure that those who access the records are doing so deliberately and only in the course of caring for a patient. However, there are some usability and behavioral reasons why an additional checkbox is not an ideal solution:

  • It adds a repetitive step that providers will take over and over throughout each day; this repetition will quickly lose any meaning, negating the very reason for including it in the first place
  • Adding another ‘click’ means adding time to access the record (and increasing the possibility for errors if they submit without the checkbox clicked) – time that providers don’t have to spare

I suggest that the board and VITL take into account the underlying concern of the ACLU – that care providers will access a patient record in error or malevolently – and find alternative ways to help mitigate these concerns that do not add time or effort to the process of accessing patient information. Some ideas:

  • Incorporate language into the sign-on screen that reminds providers about privacy concerns
  • Make buttons or other calls-to-action more descriptive – instead of the ‘Continue’ button that many people mentioned in the board meeting, make the button say ‘I have consent to view this record’ (well maybe something more brief, but you get the idea.) The language could surround the button as well.
  • Find other key moments to incorporate this language, as needed.
  • Incorporate a function into the VHIE for providers who accidentally access a patient record – so they can say ‘I accessed this record by mistake’ and that fact is logged,instead of the system having to guess whether an accidental access occurred or not.
  • I believe VITL is already thinking in this direction, but I believe the best possible security mechanism for this system would be to provide patients with proactive notifications of who is accessing their record. If they believe a person or institution is accessing it in error or with harmful intentions, the patient can flag that and take action. Let patients help with this difficult problem, and give them some transparency and ownership in the process.


Hut life, patients included

photo (13)

We made our way along a snowy trail in the woods of New Hampshire, a small train of 6 backpack-toting, sled-pulling women (and one man). The area was still recovering from an ice storm, so beneath the inch or so of snow was a thin layer of glare ice, which we navigated and slid along until we reached the ’66 Dartmouth cabin. The log cabin was more like a lodge; what I imagine an old logging camp in Northern Michigan (from where I hail) would have been like. It had a giant main room with a wood stove and fireplace; multiple sleeping lofts piled with those humorous vinyl-coated camp mattresses; gas lanterns and moose paddles hanging throughout. It was rustic and charming.
My companions were a group of mostly strangers, members of the Outdoor Mindset community in the Hanover, NH area. Outdoor Mindset’s goal is to help patients with neurological conditions spend time in the outdoors, doing activities they love. My old friend Jeanie had invited me to the outing; we’d been co-captains of our college ski team back in the 90’s, and Jeanie’s now in med school at Dartmouth. Her husband, Jake, is a co-founder of Outdoor Mindset.

Most of the people on the outing were patients with various neurological conditions like MS and epilepsy, and one woman had multiple autoimmune issues (like I do, but hers were different from mine.) I don’t think they knew I was a patient at first, as I was kind of a random and unexpected addition to the trip, so my pointed questions about their symptoms and diseases might have been a little off-putting at first. But as we walked through the woods, first on our way to the cabin and then from the cabin to the top of a small mountain lookout nearby, we spent a lot of time talking and getting to know each other. I found that many of us had symptoms in common – even if our diseases were different. A lot of us talked about neuropathy – tingling and numbness in our extremities. The conversation swung seamlessly between health talk and outdoors talk; from the cost of healthcare to a hiking trip at Kilimanjaro; from treatment options to a climbing trip or a trek through the Indian Himalayas.

Now these are my kind of people! Maybe just a ‘little tiny bit’ noncompliant patients who don’t always accept the limitations of their diseases. Who push themselves to spend time outdoors and find ways to mitigate the impact their symptoms might have on their abilities. I’ve had the autoimmune disease Myasthenia Gravis for over 20 years, and I’ve recently been diagnosed with Sjogren’s Syndrome as well – both neurological autoimmune diseases. But I’ve always been able to maintain an outdoor lifestyle; I was a ski bum in Montana for a few years, and I’ve lived/hiked/skied in VT for about 8 years. I understand what it’s like to push through symptoms to get outdoors and keep up with the activities that make you feel alive.


Later in the evening, a friend of Jeanie and Jake’s came to the cabin and taught an intro class on Pilates. She was witty and a great teacher, and we worked on our ‘six packs.’ Jeanie and the dinner crew made a great meal, and we spent time chatting into the night over a shared bottle of wine and some cream cheese brownies. I shared my personal project that aims to help patients tell better stories about their healthcare when they’re visiting with their doctors, and I got some good feedback and input from the group.

Overall, I was so pleased to have the chance to refresh my mind and body in the woods with some like-minded patients. I’m excited to have now joined OM officially, and I’m hoping to make it to more events and get other patients involved.

2013: a year of healthcare experience design

It’s the first day of 2014 here in Vermont, ushered in with bitterly cold temps and the crusty remains of two ice storms coating the ground in a thick shellack. A good time to reflect on the past year, to consider what impact I’m making on the world around me, and to think about ways I can keep improving.

What does ‘impact’ mean to me? I have to ask myself from time to time. As a patient and user experience designer, I want to use my design skills to help improve the healthcare experience for other patients. I want to help bring people together who are interested in changing healthcare. I want to help bring the patient voice into the healthcare discussion.

Did I make any progress on these goals in the past year? Sometimes it feels like I haven’t done much, but looking at the year in aggregate I’m proud of some of the things I’ve accomplished or helped with that have a direct impact on healthcare.

  • I worked on several projects professionally to make lab data more accessible and user-friendly for patients and doctors. I joined up with the company Medivo as a contractor, and over the last 6 months I worked Amanda, Brett, Sunay, Herry, Jessica, and the rest of their awesome team along with my friend/amazing designer Jackson Latka to help launch two products.
  • Along with Susan Dybbs I co-facilitated a workshop on Participatory Design at the fabulous ‘patients first’ Stanford Medicine X conference (organized by Dr. Larry Chu) – it went over extremely well with participants, and we hope to hold a longer workshop in the upcoming year.
  • Also at Medicine X, I got to meet a whole crew of amazing and inspiring e-patients whom (whom?) I admire greatly.
  • I had the opportunity to participate in a design workshop at the IDEO headquarters in Palo Alto as part of the Medicine X conference. During the day I got to know IDEO’s Dennis Boyle, patient advocate extraordinaire Nick Dawson, my fellow MG patient Laura , and a whole host of other highly interesting people.
  • Here in Burlington, I co-organized a meet-up group along with my friend Sam Meyer to bring together folks who are interested in innovation in healthcare – the Burlington Healthcare Innovators. We held a number of happy hours and an ignite-type event featuring 12 healthcare innovators in Burlington.
  • I got to organize a panel called ‘Patient Innovators and Instigators‘ at the Healthcare Experience Design conference last spring – highlighting how patients have innovated to make sense of their health stories. Ken Spriggs and Lana Voynova shared ways they have visualized their health.
  • In November I had the chance to organize a panel for the Digital Health Conference called ‘Better Healthcare by Design: How Data Visualization, Behavior Change Techniques, and User-Centered Design Can Create Successful Products‘; in the process, I got to know panelists and designers Steve Dean, Dustin DiTommaso and fellow e-patient/designer Molly Lafferty.
  • In June I gave a short ignite talk at the Eyeo conference in Minneapolis about visualizing my health history on a timeline, and about the opportunity for data visualization in healthcare. Lots of people came up to me after my talk and shared their stories with me, which was a profound experience for me and which I wrote about here.
  • I’ve had the chance to do a lot of interviews and usability testing sessions with patients and doctors as part of my work with Medivo and Medical Avatar.
  • I’ve continued to work on my health history timeline concept

I’m most happy with the relationships and collaboration I’ve had in the past year. Many of the folks I named above are people I just met in 2013, but I consider all of them close friends. We all share certain values and a collective vision; we support each other through design and health problems; we believe in the power of the individual and in the power of design; and we believe in patient empowerment above all.

Not that it’s all rosy. I find myself spread thin, pulled between competing priorities, putting off my passion projects by cleaning and straightening the house too much…one goal for 2014 is to clean less! And manage my priorities better. And stop eating so much chocolate. And…to cut myself some slack from time to time.

Sometimes it feels like I’m not doing all I can to make a difference. Often I wonder if I need to move away from Vermont, somewhere closer to a hub of healthcare technology action. But if last year was any indication, it’s possible to live in a place I love, spend a lot of time outdoors, maintain a good quality of life, and still be able to have an impact.

I’m looking forward to working hard and meeting more fabulous patients, designers, and collaborators in 2014.

Cathartic diagramming post-Medicine X

The hazy days post-Medicine X, as I have written about, were emotionally turbulent. I felt dazed. I had just experienced a potpourri of positive and negative experiences and thoughts, and I knew I needed to sort some of it out in my mind.

I finally had a chance on the plane back east, and I started by taking out a blank piece of paper and simply writing out the emotions and feelings and thoughts I’d had during the conference. Because I’m a bit compulsive about organization, I started grouping them into categories. As I wrote, I found that tears were falling down my face, and not only about the sad or scary things, but also about the love and pride I felt for my fellow e-patients. The process of writing down and organizing my thoughts helped me make sense of my feelings, which has always been the case for me; I have to write to really understand myself.

And then…I bought the symbolicons icon set from my friend Jory, and I decided to make a digital version of my mind map with his icons representing the categories. I’m including it here for your perusal.



Ode to Stanford Medicine X e-Patients

As an ‘e-patient’ attendee of the Medicine X conference this year, I had plenty of opportunities to really connect with you other awesome patients. We ate together, chatted at breaks, and commiserated, and as I got to know you casually, I was simultaneously hearing your ‘official’ e-patient stories as one by one you took to the main stage to give ignite talks and appear on panels.

Your stories were raw and painful. You talked publicly in front of an exclusive in-attendance audience (and, because the talks were streaming online, a world-wide audience) about the parts of your lives that were most difficult; that you may hide from friends and co-workers. You were poised, eloquent, moving, articulate speakers, speaking not only about your difficult journeys but about how you’ve coped and taken charge of your situation. I appreciated the opportunity to listen and empathize; I found myself crying during most of your talks.

It is one thing to hear these stories from the stage; to hear the emotion in your voices and to cry with you. But it is another thing to witness up-close your swollen and painful legs; your inability to hold a cup at a coffee break, both cases of severe arthritis. To observe you struggle with multiple breathing crises related to your autoimmune disease (which we share.) To see you two seats over from me coughing and coughing and wondering whether I should go get someone. To read the discomfort on your face, as your prosthetic leg started pinching after hours on your feet.

What I realized is that I have been walking around in a protective box that has often kept me from really – really – empathizing with you. Probably many of us walk around in such boxes. I guess the walls of my box are there partly because of technology and physical distance – the things that keep me from seeing your day-to-day experiences. The walls are also protective and serve to help me maintain some sense of ‘normalcy;’ and anyway, it would be exhausting to constantly feel others’ pain.


But what I found during the conference is that the walls disappeared, and I was suddenly face-to-face with what it really means to live as you. Which cut into something under the surface, and peeled open some of the feelings I usually keep locked deep inside.  My heart felt heavy and sad at times.

But another thing happened – a collective lifting up. It happened when you (literally at times) carried each other through your painful symptoms; it happened when you listened to each other’s stories and realized you are not ever alone again.  You showed how you’ve innovated; hacked; crowdfunded; organized people both online and off; created something out of nothing except the force of your will and your desire to help another patient. You are powerful, proud, triumphant, and honest while being vulnerable. You made me believe that anything is possible, and you made me understand that I can’t wait around for someone else to do it, that thing, that ‘idea.’ In fact, some of you may not have much time left, so if I want to help you, I’d better hurry the hell up.

Walking away from the conference your emotions were probably a little haywire, if you were anything like me. The good and bad, hopeful and depressing were all swirling around in a confusing fog, and my body and mind were tired, and I found tears spilling down my cheeks at strange moments – on a train – looking out a window – walking down a sidewalk.

But overall, I found that the lightness canceled out the heaviness, and what was left was our strength and purpose and my favorite thing of all – our connected web of hearts, held in the balance by support and love.


yes, i stole that last image from this other post. eternal gratitude to Larry Chu (and staff and helpers and e-patient advisors and everyone)…but especially to Larry for his vision of putting patients at the center of a medical conference; truly revolutionary. 

Why we need to move beyond the term ‘Patient Engagement’

The first few times I saw or heard the term ‘Patient Engagement,’ I had a neutral – or even slightly positive – reaction to it. If patients are engaged in their own healthcare, that can’t be a bad thing, right? But over time, the use (and overuse) of the term has begun to grate on my nerves, and I’ve noticed other patients and patient advocates similarly expressing their dissatisfaction. I’ve set out in this post to explore and crystallize my thoughts about exactly why we find use of ‘patient engagement’ to be misguided, and perhaps even offensive.

* * * * *

First, how are people talking about patient engagement? Here are a few general ways I’ve seen people using the term recently (not verbatim, but the gist):

  • Our product is a patient engagement tool that will help you meet meaningful use requirements
  • If only patients would get more engaged, they wouldn’t be so unhealthy and our country wouldn’t be in this healthcare mess
  • Patient engagement is the goal of our app
  • We are offering a clinic/session/seminar on patient engagement to help you improve your practice
  • Our patient engagement product improves medication adherence and patient compliance

Ok, so the next step is to examine who is using this term:

  • Companies and entrepreneurs who are selling a product
  • Institutions and individuals whose compensation depends on patients being more compliant
  • Well-intentioned organizations and people who legitimately want to improve healthcare, but who may lack a clear and specific vocabulary to express the difference they want to make

Who is missing from this list? The same folks who are missing from many healthcare conversations: patients. The term is most often used by those talking ABOUT patients, not WITH patients.

* * * * *

Why isn’t Patient Engagement effective as a term? Let’s break it down. I asked a few smart e-patients who have or will attend the Stanford Medicine X conference what they thought about it, and their answers have helped shape my points below.

1. It’s too vague

What does this term actually mean? Everyone seems to have a slightly different definition. Because it’s so vague, patient engagement should not really be any person or company’s objective. It’s like having a goal of ‘being more motivated.’ You can’t put your finger on it; you can’t measure it; it encompasses many different aspects of self-improvement.  It doesn’t really make sense.

Likewise, the fuzzy meaning of ‘Patient Engagement’ conceals important concepts and goals that we should be talking about more prominently. I’ll discuss these in detail below.

2. It implies patients are not already engaged, creating an atmosphere of blame 

When I asked patients what they thought of this term, and their responses were almost uniformly defensive in nature; this tells me that this term is talking AT patients and not WITH patients. It implies that patients are non-compliant; it implies that ‘getting patients engaged’ is our big goal, which as we have already seen is a weak and immeasurable goal. As e-patient Laura Kersting Barre put it:

“I think every patient is “engaged” at some level. Being engaged can vary between and within patients depending on the circumstances. The current use of the term “engaged” implies that there are patients that are not engaged. I disagree strongly with this – what patient is not engaged with their own illness – they live with it and they have come to an appointment.”

From e-patient, Jamia Marisha Crockett:

“I don’t want to be engaged…I want a partnership with my healthcare team.”

3. It’s paternalistic

The term implies that if patients would only do what we told them to do, they could improve their situation. As Nick Dawson said:

“…Most often when I hear engagement its from an organization or individual who wants patients to do what they say and behave according to their definitions of healthy behavior. At its worst, it used as a proxy for loyalty to a specific provider or system.”

4. It’s a buzz-phrase that is used as a selling tactic 

Looking at the entities who are talking about Patient Engagement, one can quickly see that it’s very often used by companies who are trying to sell a product to ‘payers’ or ‘providers’ (to throw a little industry jargon in there.) The aim is to decrease the burden on the payer/provider system through reduced office visits, medical errors, duplicate procedures, reduced time to diagnosis, etc – all of these things facilitated by ‘engaged patients.’ Patient Engagement is so overused as a ‘key value proposition,’ as a brand promise or claim, and as a selling tactic that it cannot possibly differentiate any product from another.

5. What about provider engagement?

When we talk about Patient Engagement, we are leaving out a vital 50% of the care relationship: providers. As Laura Kersting-Barre said:

“We also need to give equal weight to provider engagement. I have seen a few providers that were much less engaged in my treatment than me.”

As another said about providers:

“Are they aware of groups like this, events like MedX, services like 23AndMe, gadgets like Fitbit, tweet chats, etc? Are they practicing empathy and seeking to truly understand the life goals of their patients? Are they actively seeking ways to overcome traditional barriers like HIPAA, wRVUs, etc? Some certainly are, but isn’t it a bit hypocritical for providers and health systems to talk about engagement when they themselves have a lot of work to do?”

We talk often about behavior change, but usually it’s in relation to patients; however there’s certainly behavior change that needs to happen on the provider side if we are going to revolutionize healthcare.

* * * * *

What are we really hoping to accomplish when we talk about patient engagement?What is this mystical, rainbow-adorned unicorn beast that we are trying to buy and sell?  Here are a few things that I think are buried in the term, and I’m also borrowing heavily from this post by Dr. Rob Lamberts, This is what patient engagement really means.

  • Communication: between patients and providers, or patients and caregivers for example. As Dr. Lamberts said in his post:

    “Communication isn’t important to health care, communication is health care. Care is not a static thing, it is the transaction of ideas. The patient tells me what is going on, I listen, I share my thoughts with the patient (and other providers), and the patient uses the result of this transaction for their own benefit.”

    If we can support and improve communication to and from patients, we can therefore help improve the healthcare experience. Improved communication is a more specific goal with clearer outcomes.

  • Education & self-knowledge: this means that patients understand their treatment options, their medication schedules and side effects, their treatment plans, their blood results, etc; but they also are provided with well-formatted, actionable, insightful personal data that they can use to make decisions and behavior changes.
  • Collaboration and partnership: also commonly referred to as ‘shared decision making;’ patients and providers work as a team and collaborate on all aspects of the patient’s care.

What are the outcomes of improving the above? I believe that if we can improve communication, education & insight, and collaboration & partnership we will support patients in being:

  • Empowered: knowledgeable, articulate, able to advocate for themselves
  • Mindful of how their actions impact their health
  • Trusting of their care providers

* * * * *

I challenge all healthcare innovators to do the following:

  • Talk about the impact we want to make in healthcare in clear, specific, and measurable terms
  • Talk with patients, not about patients (for instance, by maintaining a patient advisory  board and collaborating closely with its members)

I hope this is the beginning of a productive conversation; if you have thoughts or perspectives on this that I have not outlined, please add your comment below.

Other e-patients who contributed to this post: Kathy Kastner, Elizabeth Apple, Casey Quinlan,  and Emily Kramer-Golinkoff.