7 posts tagged “PatientsLikeMe Team of Advisors”

PatientsLikeMe Welcomes Next Patient Team of Advisors

Posted November 14th, 2016 by

 

CAMBRIDGE, Mass, November 14, 2016PatientsLikeMe has named 11 members to its patients-only 20162017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners.

“Each year, our Team of Advisors has proven an invaluable source of inspiration and support for the PatientsLikeMe community,” said PatientsLikeMe CEO Martin Coulter. “We look forward to learning from this year’s team as we partner to identify how we can change healthcare for the better.”

More than 500 PatientsLikeMe members submitted applications for this year’s Team of Advisors. Those selected represent a range of medical and professional backgrounds and ages. They are living with a cross-section of conditions, including amyotrophic lateral sclerosis (ALS), autonomic neuropathy, bipolar disorder, epilepsy, fibromyalgia, idiopathic pulmonary fibrosis (IPF), lung cancer, lupus, multiple sclerosis (MS) and Parkinson’s disease. Members named to the team include: Cris Simon, Gary Rafaloff, Ginny Emerson, Glenda Rouland, Hetlena Johnson, Jacquie Toth, Jim Seaton, John Blackshear, Kimberly Hartmann, Laura Sanscartier and Lindsay Washington.

John Blackshear is living with multiple sclerosis (MS) and looks forward to the opportunity to share his story with others, and collaborate with PatientsLikeMe and other members of the Team of Advisors. “My experience with PatientsLikeMe has been filled with exploration, information and conversation. My health journey has been positively impacted through my connection with other members, by the various tools for tracking and logging health data, and by opportunities just like this – to participate in an advisory capacity.”

The 2016-2017 Team of Advisors recently kicked off their 12-month collaboration with PatientsLikeMe in Cambridge, Massachusetts, and will convene several times during the upcoming year. This is the third Team of Advisors the company has formed. The 2015 team focused on redefining patient partnerships and established new ways for the healthcare industry to connect with patients to deliver better care. In 2014, the inaugural group provided feedback to the research team and discussed ways that researchers can meaningfully engage patients throughout the research process.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375


Patients as Partners: An open letter from Craig to the “normals”

Posted May 20th, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients.

Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia.

What You Don’t Know About Your Friend’s Fibromyalgia

So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition.

Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ Langer have all acknowledged that they have fibromyalgia.

About 5% of the population — that’s nearly 1 out of every 20 people — have it. Let’s start with a reminder of the more common description of fibro. Fibromyalgia is a complex neurological pain disorder wherein the brain forgets how to evaluate and respond correctly to pain signals in the body and favors a new standard of “If there’s pain present the only level I know is MAXIMUM DISTRESS.”

Let’s dispel a couple of common misconceptions while we’re at it, too:

1: It’s not real pain, it’s only in your head.

This is probably the most damaging and oft-heard misconception about this disorder. Let’s begin by scientifically saying that ALL pain is “IN YOUR HEAD”! Pain is a brain response to negative stimuli. Fibromyalgia pain isn’t suddenly a new experience for the mind; it’s a disorder where the brain begins to mis-categorize pain and reacts to it as though it were “always on” and always worthy of the highest level reaction.

Your friend isn’t overly dramatic or attention seeking. Their brain is indeed reacting to a painful stimulus. They have no recourse but to feel the pain that their mind is presenting to them any more than they could not react to touching a burner on the stove. Take it from a fellow fibromyalgia sufferer; our minds do a great job of sharing that very real pain response within us.

2. Fibromyalgia is a “rare” condition.

The more we research fibromyalgia and the more we know about it, the more we realize that it isn’t very rare; it’s more likely that it’s underdiagnosed and underreported especially among males with fibro. A chronic pain disorder doesn’t sound like a very “macho” condition, and many men don’t wish to seek help with the syndrome for fear of being called unmanly, or wimpish.

Now onto the things you might not know about living with fibro. Any chronic pain disorder such as fibro takes a massive toll on the individual, their partner, and their loved ones. This toll is even worse when those family and loved ones aren’t well informed about the disorder (see misconceptions above). Many individuals living with fibro must continue to work, and their work suffers from sick days and loss of productivity.

Many relationships are tested by fire when one has fibro. It’s difficult for their partner to understand that a medical condition could have SO MANY unrelated symptoms and cause SO MUCH fatigue and pain that one ends up spending most of the day in bed instead of being the alert, energetic and happy person everyone once knew. Families, marriages, and relationships have fallen apart due to the fallout from fibro.

Now I’d like to talk about a term that I like to call the “seduction of the bed.” When you spend the day in pain, go to sleep with pain, and wake up feeling unrefreshed and still in pain, there’s a strong desire just to remain there in your comfortable bed. It’s the only place you can be that minimizes the pain, pressure, and discomfort. I hear my bed calling to me all the time; it’s seductive promise of just a smidgeon less pain if I’ll but give in and crawl back under the warm covers.

Most of us who live with this condition don’t have the choice of staying in bed all day. We have jobs to do in our home or away in an office. We try not to let our pain and fatigue show through the thin veneer of a smile that we wear in an attempt not to draw attention to ourselves. How do we cope with all of this? The day after day after day of constant pain and fatigue slowly begin to take their toll. Finally, we come to understand that we must learn how to prioritize the events in our lives every day and most times we decide those priorities at the very last moment. We have to learn, and help our friends to understand, that yes I accepted your invitation to visit tomorrow, but I must evaluate my fatigue and stamina regularly, right on up to the time of that expected visit to determine if my body is also willing to make that effort.

Sometimes the answer to that evaluation is no. Maybe today was filled with too many of the myriad of seemingly unrelated symptoms that fibro-mites experience. (Warning, the symptoms I’m about to relate aren’t “pretty” or easily whitewashed.) A full day of irritable bowel syndrome (IBS), where we have mind-numbing cramps that double us over in pain followed by the immediate and overwhelming need to rush to the bathroom for a bowel movement. Maybe today was filled with cognitive fog (CogFog), and even the simplest of words refuse to come to mind when we need them in a sentence leaving us sounding like a blubbering idiot. Maybe today is the day where any piece of clothing touching some sensitive part of our body is too painful to endure, and all we can wear are some light underwear or nothing at all.

We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as “flaky” especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice. We have to prioritize the events in our lives continually; all weighed against the insurmountable weight of this little condition called fibromyalgia.

 

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Raising awareness for immunological and neurological health in May

Posted May 12th, 2016 by

Earlier this year, we interviewed Team of Advisors member Craig, who’s living with fibromyalgia. Craig talked talked about the need to raise awareness for “hidden disabilities” like his condition. So today, we’re doing just that. May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs), which include fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

Those living with fibromyalgia or ME/CFS can have many symptoms that aren’t always easy to explain to others. Below, Craig describes a typical day for him in vivid detail:

“Imagine that you’ve just worked one of the hardest days of your life. You are so tired that you can hardly walk. Just changing your clothes is almost more effort than you can handle. Every muscle in your body is aching and tired, and the slightest movement of some of them sends them into a tight painful spasm.”

 

But while fibromyalgia and ME/CFS are both chronic pain syndromes, they aren’t exactly the same. Patients living with ME/CFS experience five main symptoms1, as opposed to the more general symptoms of fibromyalgia:

  • Profound fatigue that impairs carrying out normal daily activities
  • Unrefreshing sleep
  • Cognitive impairment
  • Symptoms that worsen when a person stands up
  • Symptoms that worsen after exerting any type (emotional, physical) effort

If you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 65,000 people are sharing their experiences, along with more than 12,000 living with ME/CFS.


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1https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


Patients as Partners: Member Jeff on teaming up with your doctors

Posted April 28th, 2016 by

This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in action to kick off conversations about partnering. First up, during Parkinson’s Awareness Month, Jeff (Deak80) shares his experiences finding the right doctor and looking for “red flags,” communicating effectively, and sharing responsibility in his care.

 

As part of the Team of Advisors, we’ve been tasked to think about how we partner in our healthcare. Here are some examples of where, and more importantly how, I put the partnership principles to use. Remember that using the partnership principles is not a quick fix nor for one-time use. It’s important to establish a strong base through consistency of use and recognition that an effective partnership is based on a mutual respect and building a long-term relationship.

Know your needs in the partnership

Starting last December, I had the opportunity to put the partnership principles to use. Changes in my Medicare Part D prescription provider were driving me to change my Primary Care Provider (PCP). My previous year Part D insurer eliminated one of my Parkinson’s drugs from their formulary list. When I reviewed my options for prescription coverage (i.e., all my medications on an insurer’s formulary list), I had only 1 Part C HMO plan which met the requirements. (Those familiar with the basic construct of Medicare know that with a Part D plan you pair Medicare Supplemental Insurance to get complete coverage, or you use a Part C Advantage plan which covers both Health and Prescriptions).

Fortunately, my Parkinson’s specialist was covered under this HMO, but my PCP was not, so I began the search. I used the insurance company’s “Search for a Doctor” capability against a set of basic requirements:

  • Within 10 miles of my house
  • Has an internet healthcare rating of 3.5 or greater. (There are multiple rating services, I use this as a guide, not a rule.)
  • If they are part of a doctors group that has provided care to me in the past, was it a good or negative experience?

Using this basic approach, I was able to identify two doctors at the same practice as a potential PCP. I called, and the one with the first available appointment became my PCP. Notice that the selection process of my PCP was short and not overly taxing. One reason for the expedited process is that during the first few appointments I am watching for “red flags” or areas of concern. If I encounter too many “red flags” I move on to another doctor. As indicated below, I did encounter too many “red flags,” and quickly selected another PCP. The only change I made to the new search is I expanded the range to 15 miles. I have met with my new PCP and I can tell that this PCP will be a much better match to the partnership principles than the first. 

“As patients we may have to put more effort into the partnership to make it work…I am OK with this since I have the most to gain in the partnership.”

Establishing an effective patient-doctor partnership requires effective and efficient communications and recognition that a 50/50 partnership never exists. What this means is, as patients, we may have to put more effort into the partnership to make it work (>50%). Personally, I am OK with this since I have the most to gain in the partnership.

I look for effective and efficient communications within the doctor’s practice in two areas:

1. Does the office administration team communicate effectively with each other?

I have left more doctors due to poor office support and the office’s inability to manage a schedule than doctor/medical issues. The office administration is a key member of the doctor’s team. They are responsible for a lot of the information getting into your medical record as well as managing your access to the doctor. Some of the red flags to look for with the office administration are:

  • Is some erroneous information sneaking into your medical file? A recent experience of mine in this area is that my birth date was entered incorrectly. Although I appreciated being 10 years younger, a lot of medical decisions, tests, etc., are driven by your age. I called three times over four weeks and they still had not corrected when I changed PCPs.
  • Does the office run on time? I don’t mean necessarily to the minute, but are they even close? After relocating from Seattle to Boston, I selected my Parkinson’s specialist based on the recommendations of my doctors in Seattle. Although the doctor was medically very good, the office frequently ran over two hours late in the afternoon. These delays caused me significant stress. I was also working full-time at this point so the delays were also impacting work. Needless to say I changed specialists to one that was medically very good and the office runs almost always within 15 minutes of being on time.

2. Does the doctor’s office have the tools to communicate effectively with the patient?

You will hear phrases such as “patient portal” or “electronic medical record” (EMR) or “electronic health record” (EHR). In either case, these are referring to the system that a doctor typically uses to communicate with the patient. Usage varies between doctors. The PCP I now have is an active user of the EHR system. Even if your doctor is not an active EHR user, make sure you are. Access to this system provides you direct access to medical records (test results, surgeries performed, etc.).

Communicate effectively

Typically, I send an email about a week before my next visit to my Parkinson’s specialist. This approach provides me the opportunity to:

  • Document how I have been doing since the last session
  • Outline the objectives for this session
  • List the questions I have for this session
  • Allow the doctor to engage other resources if needed

More importantly it helps me organize, prioritize. Additionally, there is a much better chance of me remembering to cover everything in this email versus remembering onsite. Although my memory is still pretty good, relying only on your memory is setting yourself up for a disappointing meeting.

Share responsibility

Take personal ownership of my health. I am always trying to improve my situation. I attempt to eat right, get enough sleep and exercise regularly. I also put the effort into an effective patient/doctor partnership. As I mentioned above the patient/doctor partnership is not 50/50. I am not sure what the ratio is, but since the patient has the most to gain, logically they have to put the most into the partnership.

Finally, I found there’s a lack of real partnership in a lot of medical decisions. This lack of partnership is not just limited to the patient/doctor relationship. If you have multiple specialists involved, you may have to get them to meet together to discuss your case. Until you do, I have found that doctors follow a very linear process, and that joint decision making often does not occur.

You are your best patient advocate, so step up and take charge.

 

 

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Meet Phyllis from the 2015-2016 Team of Advisors

Posted March 2nd, 2016 by

 We’d like to introduce you to Phyllis, another member of your 2015-2016 Team of Advisors. Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. Still, the former mayor of Princeton, NJ, leads an active life by spending time with her grandchildren, cheering on the Mets and taking brisk walks when she can (she’s run 18 marathons in her life).

Phyllis is also involved in a mentoring program at University of Pennsylvania, in which first-year medical students shadow her for over a year. The purpose is to bring humanity back to medicine by helping the next generation of doctors to better understand the patient perspective.

Below, Phyllis describes the power of a positive attitude and shares the lesson she’s learned from living with cancer: “Every day is a gift.”

What gives you the greatest joy and puts a smile on your face?

My eight grandchildren. In 2005 when I was diagnosed with CTCL (Cutaneous T-Cell Lymphoma) and later Sezary Syndrome, a non-Hodgkin’s lymphoma, I had three young grandchildren. Now 10 years later, I have the joy of seeing five more.

I always enjoyed running. I was a marathoner (completed 18), but once I got my cancer, my energy level plummeted and sun exposure was limited due to drugs I still take. I now smile when I can take a brisk walk on a beautiful day. Mother Nature in all her glory makes me feel joyous and alive.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Having my cancer is a full-time job! Living with my chronic non-Hodgkin’s lymphoma, and then developing a Hodgkin’s lymphoma was not expected. I undergo photopheresis treatments twice a month at the University of Penn, give myself interferon injections twice a week and apply topical chemo or steroid drugs on my skin every night. I also have scars on my arms and legs from the cancer lesions and from radiation. Perhaps the rarer diseases should get more publicity so people would know what orphan disease patients are going through.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

CTCL is not a skin cancer although it starts on your skin! It is a lymphoma, that in my case has progressed to the blood, the leukemic form called Sezary Syndrome. When it progresses to your lymph it is most aggressive. Your skin can get very red and unbearably itchy. Lesions can develop anywhere on your skin. It is a disease that can be very visible to others. There is no cure, but one may be lucky to get into remission. I have not been so fortunate after 10 years of enduring this, but I am optimistic and grateful for new medicines, innovative treatments and most of all, caring and knowledgeable physicians.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Be positive and keep a sense of humor. Educate yourself about your condition. Share your medical diagnosis only with family and friends you trust, especially in the beginning before you have your medical treatments finalized. Some people are just curious, nosey and gossips!

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important and very educational and very comforting.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

I am happy when I can help another patient who has my condition because it makes me realize how well I have coped.

Has having a serious chronic disease changed you in any way, negative or positive?

Yes. Once I got my cancer under control, I realized that every day is a gift. I feel that I appreciate life more and live each day to the fullest. I have learned “Don’t sweat the small stuff.” I love the spiritual perspective on life that came about because of my cancer.

 

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Meet Cyrena from the PatientsLikeMe Team of Advisors

Posted February 24th, 2016 by

 

Say hello to Cyrena, another member of your 2015-2016 Team of Advisors. Cyrena is living with bipolar II and lupus, and currently a PhD candidate in pharmacology.

Cyrena describes some days with her conditions as “swimming through a vat of molasses” — which makes managing her intensive student workload along with her health a challenge. She believes there is a lack of resources in higher education to support students with chronic illnesses.

Still, this hasn’t stopped her from taking control of her health. Below, Cyrena shares how she’s tracked her mood on PatientsLikeMe for over seven years, and how she prepares for every doctor visit to make sure all her questions get answered.

What gives you the greatest joy and puts a smile on your face?

Probably a full 24 hours with no obligations other than to play with my two cats, eat whatever I want, and hang out with my partner all day.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle that I have faced living with chronic illness has been getting through graduate school successfully (and in one piece!) I believe that making higher education, particularly graduate and professional education, more supportive of students with chronic illness would require that institutions recognize that chronically ill students are willing and capable of completing a challenging degree. Completion, however, requires that colleges and universities be able to provide appropriate medical and psychological support, and if they are unable to do so directly, facilitate access to these resources through disability support offices. Most importantly, chronically ill students need to KNOW that these resources exist and that people around them are confident that they will be able to succeed.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Waking up everyday and not knowing what that day will feel like. Today I may be able to roll right out of bed and get on with my day, even though it feels like I’m swimming through a vat of molasses. Two weeks from now it could take me four hours to get out of bed, take a shower, and go back to bed again because I simply am too depressed to face the day. But no matter what’s happening, more often than not no one else can see what’s going on. That’s every day living with invisible illnesses.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Become an expert! No one knows more about you than YOU do. But also learn as much about your illness(es) that you can, so that when you communicate with your physicians and other healthcare providers, you have a better chance of understanding what is going on before you leave the office.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has actually been more important to me to find people living with other chronic illnesses than finding people with my specific illnesses. I find that within particular illness communities there is a tendency to fall into a cycle of comparison — both positive and negative — rather than support. In meeting people with other chronic illnesses, I have been able to share general survival tips and identify ways in which the chronic illness experience can be improved for all members of society.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I believe that I advocate for myself whenever I have an interaction with my physicians. I come in with a specific set of questions and concerns and make sure that the appointment doesn’t end until we have at least talked about them. Short of emergency situations, I don’t believe that anything involving my health is a unilateral decision. And I make sure to get copies of anything I ask for, even if they grumble about it.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

It was PatientsLikeMe that introduced me to the concept of tracking my moods online, then other health parameters like medications and quality of life. I now have over seven years of Mood Map data online. It gives me the opportunity to go back through my history and compare external and internal factors between past and current mood events. When I first started using PatientsLikeMe, I was a more active member of the community forums, and found it immensely helpful when I needed somewhere to turn with the aches and pains of everyday life with illness.

What is your favorite type of pet?

Cats, hands down. A cat is introverted and sometimes standoffish, but (s)he’ll be your best friend if you put in a little effort.

 

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Meet John from the PatientsLikeMe Team of Advisors

Posted January 6th, 2016 by

We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. His new focus? Learning everything he possibly can about his condition — and plenty of fishing.

Fueled by what he calls his “zeal for knowledge” about ALS, John has been proactive in researching programs and clinical trials that might benefit him. He’s already participated in studies at Massachusetts General Hospital, the ALS Therapy Development Institute, and Bronx VA Medical Center.

Here, John talks about the importance of being his own advocate and shares some advice for newly diagnosed patients: Keep asking questions!

What gives you the greatest joy and puts a smile on your face?
I have a passion for fishing and then cooking dinner for my family and friends who like seafood. 2 hours from catching to dinner table is what I call fresh fish. Dinner usually starts with a glass of wine and fishing tales of the whopper that got away.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?
The obstacles that life has placed in front of me have given me relentless energies to not give up. I push myself and sometimes too much and others need to understand that while I appreciate their assistance there are times that I just want to do it myself.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?
ALS is a neuromuscular disease where I experience progressive muscle weakness and frequent fatigue.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?
Research the disease, the treatments being offered need to be in your best interests. Ask questions because doctors do not have all the answers, and if you don’t like the answers ask and see another doctor.

How important has it been to you to find other people with your condition who understand what you’re going through?
The understanding of what you are going through is paramount to understanding what’s happening to you.

Recount a time when you’ve had to advocate for yourself.
A clinical trial in Japan showed a treatment that showed promise for ALS patients and corroborated by some local doctors. Since the FDA did not yet approve it my doctor was too conservative to recommend it. I went to another doctor and am glad I did.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?
PatientsLikeMe is a valuable resource to see what others are experiencing and what treatments they are trying. Additionally, the tracking of lab results and tests is a great tool to see progression and if treatments are having an effect.

How can PatientsLikeMe be more valuable to the patient community?
PatientsLikeMe can be more valuable by awareness, not all medical professionals are aware of this valuable tool to patients. The more data we have the better the product.

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