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Autoimmune Disease, Chronic Disease

The importance of providing patient support in the face of a life-threatening illness

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Sara Wyen, a survivor raising awareness about the devastating effects of blood clots.

As a long-distance runner, I was accustomed to pain of some sort, primarily in my knee due to a lingering injury that often caused serious pain. So, when I wrapped up a run one Saturday with excruciating left knee pain, I really didn’t think anything of it. But the pain persisted throughout the weekend and was soon accompanied by a stabbing pain in my left side and shortness of breath.

I found out very quickly I most definitely wasn’t alone, but I may have never known without encouragement from my physician

At the urging of my primary care physician, I went to the emergency room and was admitted to the hospital two days later. I had a blood clot in my leg, known as deep vein thrombosis (DVT), and a blood clot in my lung, known as pulmonary embolism (PE). Having never been hospitalized in my life, I was scared, weak, exhausted and in more pain than I had ever experienced. I was put on IV blood thinners and kept in the intensive care unit for several days as doctors monitored my volatile condition due to the blood clot passing dangerously through my heart. I wondered what was happening and whether I would survive.

In the coming days, I was moved to the cardiac unit (the youngest on the floor at just 29 years old) and due to the persistence of one doctor who is now my hematologist, I was diagnosed with antiphospholipid antibody syndrome (APS). I soon learned that APS is an autoimmune condition in which the body mistakenly produces antibodies against itself that contribute to abnormal blood clotting. APS, combined with my use of estrogen-based oral contraceptives, was to blame for my blood clots.

The coming weeks and months of my recovery were the most difficult I’ve ever faced in my life. I could no longer do the things I loved to do, like run, or the things I had to do, like work, and I needed to use an oxygen tank and wheelchair. My strength was depleted, my leg and lungs hurt, and I was grappling with a diagnosis of a lifelong disorder that requires continuous care and medication. I was consumed with unwavering anxiety and depression.

The most frustrating part was that to everyone on the outside, I looked and seemed fine, but I was fighting the biggest battle of my life. I felt betrayed by my body, which I had taken great strides to take care of with healthy eating and exercise. I felt completely isolated by what was happening to me, and doctor support became crucial during the extensive recovery period.

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Cancer, Patient Care

How a kidney cancer survivor became a partner in his care

How a kidney cancer survivor became a partner in his care

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from cancer survivor and advocate Michael Lawing.

My life changed forever on a cold rainy November afternoon in 1997 as I sat in a crowded emergency room. A surgical urologist knelt beside my chair and uttered five words, “You have cancer; it’s bad.”

A week later, the day after Thanksgiving, a huge tumor that had completely enveloped my right kidney was removed.

Prior to that diagnosis I had never heard of kidney cancer and had little experience with the medical community. I had not been to a doctor in years and viewed that profession as one filled with persons who had a good education, commanded a lot of respect, had a luxurious lifestyle, and enjoyed a life of relative ease. As it turned out, I was not only ignorant about kidney cancer, I had a lot of misconceptions about doctors and the entire medical profession.

I now view medical appointments in much the same way that a salesperson would view appointments with prospective clients.

In 2000, I was referred to a specialist in a medical center some 90 miles from my home. This oncologist was knowledgeable about the only treatment that had any degree of success in kidney cancer, a very rigorous infusion therapy with many side effects that required hospitalization.

A year later, cancer was found in lymph nodes in my abdomen, and I entered the hospital to begin treatments with interleukin-2 (IL-2). Although I had been impressed by the patience and skill of this doctor, it was during the IL-2 treatments that I began to really see his commitment and dedication to his patients.

His daily schedule was impressive. The doctor would arrive each morning at 6 a.m. to review the treatment notes of the two or three patients receiving IL-2, pay each of us a visit and then would be off to see patients in the clinic or to perform surgeries. He would usually stop by during the day and he would always come by in the afternoon or evening before going home. That visit would often be after 6 or 7 p.m.

In addition to those visits, he had to be called by the nurse prior to giving an infusion to a patient. Since the patient could receive an infusion as often as every eight hours if everything was okay, this meant a call to his home in the night; sometimes he would receive several calls if patients were on different schedules.

In the ensuing years since those treatments, I’ve come to realize that the vast majority of doctors, nurses and other healthcare professionals have a very similar commitment and passion for their work. It is therefore only reasonable that I should honor that commitment and passion when I’m seeing them for an appointment.

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Behavioral Science, Mental Health, Patient Care

Take it from me: To improve compliance with psychiatric meds, we must educate patients

Take it from me: To improve compliance with psychiatric meds, we must educate patients

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from mental health advocate Gabe Howard.

3926259585_5f265f6683_zWhenever I give a speech to psychiatric practitioners, I start by giving the group index cards and pens and asking them to write down their most important goal for their patients.

Answers like “be med-compliant,” “miss fewer appointments,” and “follow my instructions” are always the most popular. Patients’ answers are much different. They write “live well,” “go to Hawaii,” or “get back to work.” This exercise serves as a reminder to physicians that taking medication is not a final goal, but a step toward the ultimate goal of living well.

It’s important to realize that patients aren’t failing to take their medication as prescribed because they are incompetent, lazy, or intentionally self-sabotaging. Patients often skip doses or skew directions because they are scared of something, often due to a misunderstanding.

They may misunderstand the prescription instructions or the way the drugs work and this misinformation quickly becomes fact in a patient’s mind. They may already be confused by their diagnosis and lack knowledge about their condition.

Once I understood how difficult it was to find the correct combination of medications, I felt much more hopeful.

More often than not, patients suffer from side effects or even a perceived moral failure by taking psychiatric medications. I’m surprised that many clinicians aren’t aware of the stigma patients feel about taking medication. They believe it means they are “less of a man,” “not capable of being a good mother,” or other such nonsense. Psychiatric medications are often first prescribed to people in their early 20s who are not used to taking medication. Most 20-somethings are still in the “I’m invincible” phase.

I believe this can be remedied with education.

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Chronic Disease

Laughing through the pain: A comedy writer’s experience with chronic illness

Laughing through the pain: A comedy writer's experience with chronic illness

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a Los Angeles woman with Ehlers-Danlos Syndrome.

woman laughing2When you fall down at least once a week, you learn to laugh it off. No matter how much it hurts, you laugh because you know it makes other people more comfortable with what’s going on. If they believe you’re all right, your story is a comedy rather than a tragedy. I’m quite sure that this lesson I learned as a child (and have called on hundreds of times since) had a big part in my decision to become a comedy writer and performer, a career I began a decade before I was finally diagnosed with Ehlers-Danlos Syndrome.

Everyone with my rare connective tissue disorder knows the routine of explaining our condition to others. I like to gauge at what point a healthy person’s eyes glaze over and they check out completely; it’s usually around when I get to my issues that are caused by EDS, like arthritis and gastroparesis. After my first few monotonous rundowns of what ails me failed to enthrall anyone, I began weaving elements of humor into my explanations: “I have hip dysplasia, so I can’t be in the Westminster dog show… My joints hyperextend, which is great for sex but terrible for JV soccer… I tore my hamstring in Greece, but it’s not like that’s the worst thing that ever happened there.” Once engaged, people are much more likely to find some aspect of my condition that interests them and ask about that. This type of light interaction is far more comfortable than feeling like I’m teaching an NIH seminar on some disease nobody cares about.

In my experience, the people who really appreciate someone with a sense of humor are those I rely on most: Doctors and nurses. Just after my diagnosis, I was so confused and in so much pain that I was relatively curt with medical professionals. I also thought that if I even smiled, they would think I was faking my illness. But once my symptoms started to improve a bit and I understood more about what was happening, I tried being open and jovial with those who were treating me. The result was great; it should not have come as a surprise that a doctor who likes his patient is more likely to pay attention to her. Regardless of how badly I feel or how much I think something devastating may be happening to my body, I now try my hardest to make whatever dumb jokes I can manage in the hospital or at the doctor’s office. The staff members, many of whom somehow make it through day after day of maudlin events and miserable people, respond quite positively to my Tommy Boy quotes and ridiculous metaphors about how the exam room smells like a robot dog’s pee. (In fact, I would like to think I get better treatment because of David Spade.)

The need to laugh off my issues has become so innate that it is now my first response when I go into shock. My old roommate loves to tell the story of when I stepped onto our back porch and it looked like a sniper hit me: I was down in an instant. She ran out to see what was wrong and found me laughing hysterically, screaming, “I’m fine! Everything’s fine!” When I saw her worried, maternal expression, it made me even more afraid; I knew I had to alleviate her concern for both of our sakes, so I kept up my laughing and made jokes even as the unbelievable pain set in. As it turns out, I had ruptured my Achilles tendon and torn my calf muscle so badly that the orthopedic surgeon said it looked “like pulled pork; like a zipper went down the whole thing from top to bottom.” Looking back, I laughed and joked to make my roommate think everything was fine – the way you would treat a toddler who fell down and looks to you to gauge the severity of his injuries – but really I was the toddler, and making myself laugh got me through it.

I do not know where my life would be without my love of comedy, nor how I would have made it through the ups and downs of Ehlers-Danlos Syndrome. When it comes to relating to people, passing time in the hospital, or just convincing ourselves that there’s a lighter side to almost every situation, the most important part of the human body is the funny bone.

Paula Dixon is a comedy writer and photographer based in Los Angeles. She is a graduate of the USC School of Cinematic Arts and the Spéos Institute of Photography in Paris. She will be returning soon with her humorous podcast The Chronic Life, which covers chronic illness as well as pop culture and personal revelations.

Photo by bruna camargo

Cardiovascular Medicine, Chronic Disease, Women's Health

Surviving a betrayal of the heart

Surviving a betrayal of the heart

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient with spontaneous coronary artery dissection (SCAD).

2259323415_ab113de5bc_zThis is a story about a betrayal of the heart — an actual heart. Girl has heart, girl treats heart well, heart gets torn up and girl figures out how to recover from this betrayal by her own body.

Last summer, I participated in my second sprint triathlon. The first part was a half-mile swim in a cold lake. I’d been swimming this distance for months and had done this same triathlon before. Yet, I couldn’t catch my breath, my chest hurt and swimming was appallingly hard for me. But I persevered and finished the biking and running events just fine.

Two weeks later, unnerved by my unsuccessful swim, I steeled myself for a similar swim across a lake in Idaho. Almost halfway through my swim, I started struggling to breathe and felt a band of pain and searing cold across my sternum. I felt weak and cold and couldn’t swim anymore.  Fortunately, my husband was on a paddleboard close by. I called him over, climbed on the board and hung onto his ankles for dear life (vomiting occasionally) as he paddled us to shore.

In retrospect, I had many of the typical symptoms women experience when having heart attack, but it took a while before it dawned on us that I was suffering from one. I don’t fit the profile: I was 53, nearly vegetarian, slim, fit with a mild addiction to kale smoothies. However, I had just gone through menopause and was on a low dose of HRT.

Fortunately, the ER doctor in Idaho did an EKG and figured out I was having a heart attack. The next day, an angiogram found a tear in the innermost wall of my coronary artery called a spontaneous coronary artery dissection (SCAD). This tear causes blood to flow between the layers of the arterial wall, blocking blood flow and causing a heart attack. SCADs are rare, yet, nearly 80-90 percent of SCAD patients are women in their early 40s with no additional risk factors.

It’s not yet known what causes SCADs. So, I am left with a lot of unanswered questions, and I’ve had to slowly rebuild trust in my own body and abilities, knowing my condition is rare and poorly understood.

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Chronic Disease

“What might they be interested in learning from me?” Tips on medical advocacy

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient with Marfan syndrome.

Being an advocate to the medical community is an important way to raise awareness of your condition.

Many people throughout the years have asked me why I became an advocate, and my answer is found in what was a perfect storm of several factors. One large one was losing my ability to work in the executive career that I had made major advancements in. This loss, coupled with having to navigate the social security disability system and the back-and-forth with my private disability insurance company, made my overall health (both physical and mental) much worse. It’s one thing to have to suffer with one’s health (or lack thereof) but to have to fight for benefits that you’ve earned and payments from a private insurance policy that you’ve paid decades for, while dealing with the many financial challenges that accompany the incredibly difficult decision to stop working make for a very lonely and aggravating time.

By going through rough times, I learned what works and what to avoid – and I made a promise to myself that I would help others through the process. I want to be a source of support and let patients know that they’re not alone and that there are better days ahead. Not only am I helping others advocate for themselves but also by doing so, I help myself. It’s a good feeling to help another person; it’s my medicine for dealing with my day-to-day health challenges.

It can be daunting, however, to do advocacy work and to reach out to the medical community, whether it be a hospital, a medical school, a local health fair, a private medical practice or your own doctor/health-care provider’s offices. In the last 15 years of working on various forms of medical advocacy, I’ve found through trial and error some useful steps in obtaining the best results in each area of the medical community and all health-related entities.

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Chronic Disease, Patient Care, Pediatrics

On growing up with chronic illness: “I’ve never felt like I had ownership over my body”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient with Crohn’s disease.

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As a child who was diagnosed with Crohn’s disease at the age of nine, I learned to give my power over to my doctors and parents. I never questioned the constant prodding, the pain that I had to endure from different tests and exams, the dozen pills that I swallowed down each day, because after all, I was to trust doctors and adults. They knew what was best for me. They knew what was best for my body. And of course, this is true – but only to an extent. Please hear me out.

In no way am I undermining the miraculous work that medical professionals do each and every day. I am beyond grateful for the way that my disease was handled, I was given a fairly normal childhood because of the way my medical team was able to manage my disease. And on top of that, I have the most incredible parents who handled my disease beautifully; they allowed me to feel supported, loved and taken care of. Honestly, I just had to show up for doctor appointments, swallow pills, and be a kid. I left the details up to the adults.

But then I started growing up. High school, boys, and school dances became my new normal. I lost my power at the age of 17 when I was date raped. Although I attempted to say “no” and stick up for myself, I ultimately didn’t know how to confidently do this. I didn’t know how to command respect because I was so used to never being asked to say “yes.” Unfortunately, this situation snowballed into another date rape and ultimately a suicide attempt. I truly felt detached from my body. It wasn’t mine. I didn’t know how to handle it. I despised it. It was the source of so much pain. And so, I wanted to leave it.

I never connected my inability to stick up for myself with being a child of chronic disease until the last couple of years. As I reflect back, the correlation is so clear. I never was taught to question what my doctors did to my body. I cannot recall being asked if it was “okay” to be examined or to be touched. If I was in a doctor’s office, it was just assumed and expected. To be clear: There was absolutely never anything inappropriate that happened to me in my doctors’ care. I think the only reason that the perceived lack of power on my side affected me is because I was a child, and I didn’t have the capability to differentiate the way I handled my body in the care of a doctor versus the hands of a teenage boy.

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Chronic Disease, Parenting

Living with the uncertainty of NF

Living with the uncertainty of NF

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Kate Duff of Massachusetts.

Silver LiningWhen our adult daughter Megan was about three years old, I noticed several bumps on the side of her head, and some brown spots on her belly. After meeting with her pediatrician, Megan had surgery to remove the bumps.

The week after the surgery, her surgeon called to say that what he removed were tumors and that Megan had neurofibromatosis (NF), and that we would be hearing from her pediatrician, and he hung up the phone. This was in 1987. There was no quick or easy way to look up information on NF, and never mind trying to research – I had NO idea what the surgeon even said.

Our pediatrician told us what NF was and that Megan most likely had this disorder, but she had never had a patient with NF. She gave us a Neurofibromatosis Northeast pamphlet that detailed what seemed to be a lot of scary things about the disease. We left the office overwhelmed and just couldn’t believe that our perfect little girl had this horrible disorder. We agonized about Megan’s future.

The next day, I called the number on the back of that flier. What I know now is that that was a lucky day for my family and me. The nonprofit organization Neurofibromatosis Northeast and its executive director, Karen Peluso, have saved my family and Megan many times over the last 28 years.

Although NF has brought us challenges, it has never been too serious or life threatening. Megan has had her share of surgeries to remove painful and disfiguring tumors, and she has dealt with learning disabilities that she has overcome to become a college graduate.

But in October 2013 all that changed. A week before her 30th birthday, I had to give Megan the news that she had aggressive breast cancer. We learned that people with NF have a four times greater risk of having breast cancer.

Megan has had a double mastectomy, reconstruction surgery, two rounds of chemo, and now doing radiation and a 3rd round of chemo. We have approached her breast cancer as we have approach her NF – by taking one day at a time – and living this way has truly helped her stay positive thru her treatments. Even with her NF, Megan has never asked, “Why me?” She handles all of this with amazing courage and grace. She is my hero.

Five years ago I met a group of mothers whose young children were recently diagnosed with NF. I wanted them to meet Megan to see how bright their children’s futures can be; I wanted them to know it’s not all gloom and doom.

If we can keep the doctors at the microscopes so they can find a cure for this horrible disorder, maybe we can make patients’ quality of life better and not so scary and uncertain. Research money is what will allow that to happen.

When Megan was first diagnosed, a dear friend said how sorry she was, and that she just couldn’t find a silver lining in all of this. But my friend was wrong. Through this journey with Megan and NF, we may not have seen it right away, but it was there: All the amazing, caring and generous people we’ve met along the way are the silver lining.

Kate Duff lives in Massachusetts with her family. For the past three decades, through Neurofibromatosis Northeast, Duff has helped raise money for NF research, and also support families affected by NF.

Photo by LadyDragonflyCC

Chronic Disease, Genetics, Patient Care

Navigating a rare genetic disorder with a positive attitude

Navigating a rare genetic disorder with a positive attitude

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Carla Charter.

roam-1024x1024Seven years ago, when my youngest child was diagnosed with chromosome 12q duplication syndrome, I learned that I too had the syndrome. It’s a rare condition caused by the abnormal duplication of the long arm of chromosome 12, leaving three copies rather two.

At that point the 12q was more of a footnote to my hectic life. Syndrome or not, life went on. There was work and the children and hundreds of other things to think about, none of which the 12q really affected.

The syndrome that hadn’t affected my life too much reared its ugly head two years ago while I was driving home one night. In an instant, a highway exit disappeared from view and came back, giving me an extreme “What the heck was that?” moment. Little did I know that this episode was about to usher me into the world of visual impairments. I now have forearm crutches to help me walk. My visual distance impairment changes are frequent, and I have slight hearing loss.

Because I’m an advocate for people with disabilities, some praise me as inspirational. But I am not inspirational. I am human. There are days when I feel frustrated, overwhelmed with the changes in my life, and even a little cranky. It’s OK to admit it, because I’ve got a family who loves me through all of it. If I seem a little quiet or snappy, you may be meeting me on an off day. We all have off days — disability or not.

Those of us with disabilities also have our own way of coping with them. For me, it’s humor. It’s the reason I had a bright pink cane for a time. If I was going to have to deal with using a cane because of the 12q, I was going to find the brightest prettiest cane I could find and rock the heck out of the 12q.

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Cardiovascular Medicine, Chronic Disease, Patient Care, Women's Health

Welcome to your new country: A heart patient on her “travels” with heart disease

Welcome to your new country: A heart patient on her "travels" with heart disease

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We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from heart patient Carolyn Thomas

My doctor once compared my uneasy adjustment to life as a heart patient with being like a stressful move to a foreign country.

I used to be pretty comfortable living in my old country, pre-heart attack. I had a wonderful family and close friends, a public relations career I loved, a nice home – and a busy, happy, healthy, regular life.

Then on May 6, 2008, I was hospitalized with what doctors call a “widowmaker” heart attack.

And that was the day I moved far, far away to a different country.

Many who are freshly diagnosed with a chronic and progressive illness feel like this. The late Jessie Gruman, PhD, who spent decades as a patient, described in a Be a Prepared Patient Forum column that sense of being drop-kicked into a foreign country: “I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”

Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from hospital.

I felt exhausted and anxious at the same time, convinced by ongoing chest pain, shortness of breath and crushing fatigue that a second heart attack was imminent. I felt a cold, low-grade terror on a daily basis.

Instead of feeling happy and grateful because I had survived what many do not, I frightened myself by weeping openly over nothing in particular. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, showering or even getting out of bed. Everything seemed like just way too much trouble.

Where once I had been competent, I now felt unsure.

Where once I had made decisions with sure-footed speed, I now seemed incapable of deciding anything.

And my worried family and friends couldn’t even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my bravest smiley face around them so we could all pretend that everything was normal again. But making even minimal conversation felt so exhausting that it eventually seemed so much easier to just avoid others entirely.

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