Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9. Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis. What difference has that made for her? And how has she started to take control of her treatment course as of late? Find out that and much more in this inspiring interview.
1. Tell us how you were treated by classmates and school nurses growing up.
The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.
2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.
I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.
3. What’s helped you develop the confidence and love of life you have now?
I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.
Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!
Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up. One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition. Another recalls receiving notes in her locker informing her that she was not welcome in gym class or study group. And yet another shares that her classmates spread sexual rumors that her psoriasis was really rug burn and voted her most likely to get pregnant in high school.
These are just a few heart-wrenching examples of the stigma, ignorance and misinformation that often surround psoriasis, which is not contagious. For these members, the bullying they encountered growing up often had a major psychological impact that included hurt feelings, self-consciousness, depression, anger, loneliness and dating difficulties. Some report that it ultimately made them stronger, however. Have you been mistreated as a result of your psoriasis? Share your stories with others who can truly relate in PatientsLikeMe’s growing psoriasis community, which now has over 3,400 members.
Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor rating and patient feedback website.
What does Dr. Feldman think about what we’re doing at PatientsLikeMe? And what’s his take on the current challenges for psoriasis patients, as well as the treatment advances that may be ahead? Find out that and much more in our interview.
1. As the founder of DrScore.com, tell us how rating doctors online can improve medical care.
Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era.
2. What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy?
PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to permit data sharing among patients so they can learn from one another. Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases. Openness is a terrific attribute in this Internet age. I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!
3. You’ve done extensive research around treatment adherence. What are the considerations for patients?
Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them. Taking medicine isn’t easy, unless it is a habit. And when a patient starts to use a new medicine, taking it isn’t a habit. Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications. I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).
If patients are fearful, they should have an honest discussion with the doctor about it. One thing is certain: patients should be honest with their doctors about how they use their medicines. It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else. If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know. The doctor wants to know and may be able to change things.
4. We have a growing psoriasis community. What challenges do psoriasis patients face?
Psoriasis has a huge impact on patients’ lives. It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others. The lesions aren’t just unsightly; they can be itchy and painful. The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression. There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky. One of the biggest challenges is getting educated about all the potential options. It isn’t easy.
5. In our forum, patients have been discussing whether diet can affect psoriasis. What’s your take?
Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system). But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly. Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped. The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.
6. Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?
As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis. As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement. And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.
Is there a caregiver in your family? For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?
November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis. Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week. Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.
Yet what many people may not think about is the economic and health impact on the family caregiver. Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers. In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves. Read other eye-opening caregiver statistics here.
PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members. That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend. Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles. That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.
Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers. Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.
Don’t abandon them just because they are depressed or unwell.
What they suggest you do instead…
Do give them a hug for no reason but because you love them.
Do be gentle with your words and be an anchor amidst the storm.
Do make chicken soup and keep the fridge stocked with favorites.
Do listen and ask questions, and don’t feel like you have to relate.
Do remember that it’s okay if you don’t know what to do or how to help.
Do call or email just to let them know that you are there for them.
Do offer to go on an evening stroll or a walk in the park.
Do allow them to be alone if desired and come to you when ready.
Do know that you don’t have to cheer them up – only help keep them safe.
Do remember they are the same person they always were, just with a diagnosis.
Do you have other suggestions to add? Or perhaps a different perspective? Share your insights in the comments section, and if you’re not already a member of PatientsLikeMe, connect with thousands of others like you in our active mental health community.
Did you know that one in four adults – or approximately 57.7 million Americans – experiences a mental health problem in any given year? Or that one in 17 lives with a serious, chronic mental illness?
Since 1990, National Mental Illness Awareness Week has been recognized by the U.S. Congress as a time for mental health advocates and patients to join together for various awareness-raising activities. Sponsored by National Alliance on Mental Illness (NAMI), the goal of this week is to transform the way we think about mental illness, which is defined by NAMI as “a medical condition that disrupts a person’s thinking, feeling, mood, ability to relate to others and daily functioning.”
Like any other medical condition affecting a particular organ, mental illness is not caused by personal weakness or character defects, and it can affect individuals of any age, race, religion or income. As an example, some famous people who are known to have lived with mental illness include Abraham Lincoln, Winston Churchill, Gandhi, Tennessee Williams and Mike Wallace (who was eulogized by one of our members last June). Below is a new PSA ad for National Mental Illness Awareness Week 2012 that focuses on some of these legendary icons, stressing that “you are not alone in this fight.”
In addition to exchanging in-depth treatment evaluations about the effectiveness and side effects of commonly prescribed medications such as Cymbalta, Klonopin or Wellbutrin, our members are connecting and supporting each other daily in our Mental Health and Behavior Forum. Currently, there are more than 39,000 participants and more than 333,000 posts in this highly active forum, where you can find answers, empathy, humor and thought-provoking conversations day or night.
There are several different ways to participate in this annual event, which promotes the societal benefits of prevention and treatment for mental and substance use disorders:
Now in its 23rd year, National Recovery Month was founded on the belief that we should celebrate the gains made by those in recovery, just as we would with those who are managing other health conditions. The goal is to spread the positive message you can live a healthy and rewarding life with the aid of treatment and mental health services.
Are you looking to start on the road to recovery? Reclaim your life by calling SAMHSA’s National Helpline (1-800-662-HELP), where you can be assisted in both English and Spanish. If you’re already in recovery, find solidarity and support by connecting with others like you at PatientsLikeMe. We have thousands of patients sharing their experiences with numerous disorders, including:
In honor of Men’s Health Week, we are pleased to present a guest post by PatientsLikeMe member tiredoftired, a young man who has been living with major depressive disorder since 2007. Don’t miss this moving essay about how Mike Wallace’s passing earlier this year impacted and inspired him.
As I was driving to therapy on an April afternoon, I heard a news report that Mike Wallace, an original host of the television show 60 Minutes, had passed away. I was intrigued when the short segment highlighted Wallace’s accomplishments in his battle with depression. I was only somewhat familiar with the show, but it was obvious from the report that he had a decorated career as a journalist and his professional accomplishments could have easily taken the full slot. Having struggled with depression myself, I felt compelled to investigate his life further.
For those of you who are unfamiliar with his work as I was, Wallace was a pioneer of the newsmagazine format, which shaped journalistic television. He was a pit bull of a correspondent; with his aggressively confrontational approach, he posed direct questions that others were too afraid to ask, often leaving the subject shaken. Wallace interviewed some of the most eminent, and even fearsome, people and did not hold back on his interrogation-like technique.
But Wallace said that his greatest accomplishment in life was that he survived. Wallace endured several bouts of severe depression throughout his life, the first of which left him in such emptiness and despair that he attempted suicide as a means of escape. He used his personal experiences with depression to share ideas that would give other sufferers advice and hope. Reading about his life made me feel the same comfort he provided to others when he was alive, and I have become encouraged by lessons he transmitted. Here are the top four:
There is no shame in depression: Wallace constantly repeated that depression does not signify an emotional weakness. The pain, inability to cope and despair are unfathomable to those who have not experienced depression. It is not a sadness that is surmountable by sheer willpower. Aside from reassuring sufferers that their pain and disabilities were justified, it comforted them by seeing someone well-respected using his high-profile position to dissolve social stigma.
There is no shame in asking for help: The stigma can prevent people from seeking help and make them embarrassed that, unlike others, they are unable to push through sadness themselves. Wallace said that the single most important thing you can do is to go and talk to someone. He stressed that it is impossible for one to handle alone, and he encouraged people to seek therapy and take medication, as well as emphasizing the importance of social support from family and friends.
You are not alone: During depressive episodes, Wallace often talked to two close friends that also experienced depression. By talking to those who could truly empathize, he felt comforted and validated. Not only was he reassured that what he was feeling was normal, they were able to give him valuable insight and ideas.
There is a light at the end of the tunnel: Wallace’s friends also gave him hope. He saw that they had been through the darkness of depression and survived. And he passed along that message to others. As bad as it seems now, he told people, look at how he emerged from that same prison and went on to live a happy, productive life.
Mike Wallace has inspired me to perpetuate these messages and give others the same comfort and hope he gave me. Depression is a real medical illness and pursuing treatment is nothing to be embarrassed about. With the help of mental health professionals and a strong support system, we have the ability to fight through the darkness. By doing that, we can do more than just survive – we can build productive and meaningful lives.
This graphic (which you can click to enlarge) gives you a feel of the many emotions, concerns and thoughts that surround the topic of mental health. But the best way to increase awareness and knowledge, we believe, is to learn from real patients. According to NAMI, one in four adults experiences a mental health problem in any given year, while one in 17 lives with a serious, chronic mental illness.
To help show what it’s like to live with depression, we thought we’d share some of our members’ candid answers to the question, “What does your depression feel like?”
“My last depressive state felt like I was in a well with no way to get out. I would be near the top, but oops….down I go. I truly felt that I would not be able to pull myself out of this one. I felt hopeless, worthless and so damn stupid, because I could not be like other people, or should say what I think are normal people.”
“It feels like living in a glass box. You can see the rest of the world going about life, laughing, bustling about, doing things, but they can’t see you or hear you, or touch you, or notice you at all, and you cannot remember how to do the things that they are doing, like laughing, and just being ordinary and satisfied with it. You are totally alone although surrounded by people.”
“It feels like walking in a dimly lit hallway (or totally black, depending on the severity) with no exit in sight and no one else around. You keep walking hoping to come to the end, trying to feel along the walls for some sort of door that will take you out of this tunnel, but to no success. At the beginning you feel like there has to be an end or a door of some sort – something to get you out, but as you keep walking, your hopes damper by each step. You try yelling for help, but no one hears you.”
“Depression is very much like feeling as if I have no arms nor legs and (what’s left of) my body is upright in the middle of a road on a cold, dark, foggy morning. I can’t run. I can’t walk or crawl. In fact, I have no options. I have no memory of how I came to be there. I know I’m going to die, I don’t know when or exactly how. There’s nobody around who sees me or understands my situation. If somebody gets close by and I scream, they’ll run away in fear. My family has no idea where I am and I’m alone… except for the headlights down the road.”
Can you relate to any of these descriptions? If you’ve battled depression, we encourage you to join our growing mental health community and connect with patients just like you. Also, stay tuned for another blog later this week about the types of data being shared by our mental health members.
If one in four American adults is affected by a mental health condition, that means someone within your immediate friends and family could be struggling with a treatable condition right now. Do you know who your “1 in 4″ is? Or what signs to look for in someone who may be depressed?
Two weeks ago, we highlighted two member-created videos that help show what it’s like to live with a mental health condition. Today, on the last day of Mental Health Awareness Month (whose theme this year is “Do More for 1 in 4″), we’d like to tell you a little more about our mental health and behavior members at PatientsLikeMe.
What mental health and behavior conditions are represented at PatientsLikeMe?
The top five conditions reported by our members are:
Our members with mental health and behavior conditions are using over 1,700 treatments, including prescription drugs, medical devices, physical therapies, etc.
Some of the most popular topics “tagged” in the mental health and behavior forum, which currently has more than 25,000 members, include coping strategies and stress.
Also, check out all four videos submitted to the PatientsLikeMe “Express Yourself” Video Contest by mental health and behavior members.Anyone can vote on their favorite videos (including non-members), so help us determine who will win the five prizes.
With more than 82,000 patients on PatientsLikeMe, there’s a lot of information being shared with one another. Last month, we highlighted how your sharing affects the experience of many on our site (One For All series).
Today, we continue that theme by taking a look at information being shared across all of our communities that many of you may have in common. Can you guess how many of you are on similar treatments or experiencing similar symptoms even though you are in different communities? Read on to find out.
DID YOU KNOW…
Of the members who have reported their age, more than 8,000 of our of you have indicated you’re under 30-years old and more than 12,000 are 55-years old or older.
You report using more than 4,500 treatments for your conditions, including prescription drugs, supplements, over-the-counter medications, medical devices, life-style modifications, therapies, etc.
The most widely used prescription drugs reported across communities include Gabapentin (Neurontin), Glatiramer acetate (Copaxone) and Duloxetine (Cymbalta).
Some of most frequently “tagged” topics in the forum include research, symptoms (e.g., pain), SSDI (Social Security Disability Insurance), coping strategies and side effects.
A special thank you to all of our members for continuing to share your data and experiences to help others just like you.
ADCO Mirteron is an international brand of mirtazapine, a tetracyclic antidepressant that is used to treat depression and, in come cases, insomnia. At PatientsLikeMe, where more than 115,000 patients are sharing their experiences with prescription drugs, supplements and more, we have just one patient who reports taking ADCO Mirteron while more than 300 patients report taking another branded or generic formulation of mirtazapine. (Other brand names include Remeron, Avanza, Zispin, Axit, Mirzaten and Rexer.)
What can we learn from these patients’ experiences? Quite a bit, actually, thanks to PatientsLikeMe’s unique data-sharing platform. For example, the most commonly reported dosage of mirtazapine is 15mg daily, the most commonly reported cost is “under $25,” and the most commonly reported side effects include weight gain, increased appetite and drowsiness. 153 of our patients have discontinued mirtazapine, with side effects, lack of efficacy and doctor’s advice among the top reasons cited.
Here are some highlights from the 130 treatment evaluations our patients have submitted for mirtazapine (the generic form of ADCO Mirteron):
“After trying almost every other depression med and mood stabilizer out there, this is the one that’s worked well for me. Wish I had found it sooner.” – Patient with major depressive disorder
“I take this medicine to help me sleep at night, but it also helps a bit with my depression and anxiety.” – Patient with fibromyalgia
“Works well, but leaves me a little sleepy or slow throughout the day. Need to make sure you get 8-9 hours sleep or the sleepy feeling stays with you all day.” – Patient with post-traumatic stress disorder (PTSD)
“Very hungry when taking this med. I take 30mg in the morning and by 2pm I have had my total daily allowance of calories!” – Patient with general anxiety disorder (GAD)
“When I was depressed, it was very effective and my body adjusted to the sedation effects. As my depression lifted, I experienced more and more difficulty in waking up.” - Patient with bipolar disorder
“I can see why other people can have problems with the constant drowsiness and increased appetite/weight gain, but for an anxious under-eating insomniac like me, it was ideal.” – Patient with major depressive disorder
JOIN PATIENTSLIKEME TODAY
Have you taken ADCO Mirteron – or another brand of mirtazapine? Join PatientsLikeMe and add your experiences to our growing body of knowledge. Then, stay for the support. With nearly 30,000 members who report a mental health condition, we have a tremendous amount of discussion and activity in our Mental Health and Behavior Forum. Chime in today.
In honor of this month’s Mental Illness Awareness Week, here’s a snapshot of what’s happening in our PatientsLikeMe Mood community. Launched in 2008, the community now has more than 18,000 patients. Below are some interesting facts about the community, so please read and share on!
DID YOU ALSO KNOW…
You can search for patients under 15+ diagnosis categories, including depression, bipolar, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), anxiety, addiction to tobacco, addiction to alcohol, eating disorder and more.
Patients are using more than 1700 treatments, including prescription drugs, supplements, over-the-counter medications, life-style modifications, therapies, and more.
The top lifestyle modification reported by our patients is positive self talk; and sleep is the #1 exercise cited.
Some of the top topics “tagged” in our forum discussions to date include specific treatments (like Lamictal, Lithium, Wellbutrin and Seroqul), as well as borderline personality disorder, coping, anger and journaling.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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