My Profile

How do I add a picture to my profile?
To upload a picture from your computer to add to your profile:
1. Go to the picture section of your profile.
2. Click on “Browse…” to find a picture on your computer that you want to use.
3. Once you’ve navigated to the file, click on “Upload Picture".
4. When the picture is done uploading you'll see a green bar at the top with the message "Your profile picture has been updated."
Why does PatientsLikeMe ask about my location in the basic information section?

Adding location information (city, state, country) to your profile enables you and other members to benefit from several useful features including:

1. Finding others near you to discuss and share information about local services, specialists, clinics or experiences that may vary by country, state or city.

2. Holding local gatherings of PLM members.

3. Inviting local members to support groups and fundraising or awareness events.

(You can map search results on the Patients tab by selecting the “Map Results” option on the bottom of the page.)

We are just beginning to explore the connections between geographic data and health in the real world, but we know geographic variation in treatments and quality of life is important to understand. Factors such as weather, natural disasters, proximity to clinics and disease specialists and laws that vary by state and country, etc. can have a big impact on health outcomes. We hope to be able to use geographic data to explore these connections.
What sort of information should I share in the About Me section?

You can tell your story in the About Me section of your profile. How would you describe your medical history to another patient like you? Use the Short Bio to describe yourself in a few sentences. Use the Long Bio (including pictures!) to share more details.
What are the charts on my profile for?

The profile charts allow you to see how your overall health, treatments, symptoms, and side effects change over time.

Watch the PatientsLikeMe Profile Charts screencast by PatientsLikeMe web developer Adam Darowski to get a tour of the profile charts.
How do I share information about my health on my profile?

Sharing information on your profile is a great way to learn more about how you’re doing over time. It’s also a great way to let others know what you’ve been through and where you are on your journey as a patient.

Get stared by filling out your condition history. From there, you can add health information to your profile by taking simple surveys including Instant Me and Quality of Life. You might also have specific surveys for the conditions you’ve added to your profile. For more information, check out the details on the My Profile page.
What do the stars on the patient icon (nugget) mean?

Profile stars indicate how much health information you are sharing. The more you share, the more you can understand about your own experience with your condition and the more you are helping others to learn. Find out more about how to earn your 3 stars, and what each star stands for on your Get 3 stars! page.
How do I get 3 stars?

Each member has a personalized page which serves as a handy checklist for how to get 3 stars. You can get there at anytime by clicking on the Get 3 stars! link from your 'My Profile' navigation menu:

Or by going directly to this page: http://www.patientslikeme.com/stars
How can I get a free PatientsLikeMe t-shirt?

All 3 star members are eligible for a free PatientsLikeMe t-shirt. Check out your Get 3 stars! page to find out how to get your 3 stars. Once you have 3 stars, go to http://www.patientslikeme.com/t-shirts to request your free t-shirt.

Note: A mailing address is required In order to send you a t-shirt. However, we won't add any of this information to your profile or share it with any of our partners.
What is the box next to my profile picture called and what does it mean?

The box next to your picture is called your ‘patient icon’ or ‘nugget’. It summarizes your current health status for other members. If you roll your mouse over it for a few seconds, you’ll get an expanded view explaining what each of the icons stands for and what part of your profile it reflects. Stars, which reflect how much health information a person has shared, are displayed on the left hand side of the patient icon (nugget).
How do I add a condition to my profile?

You can add a condition to your profile by clicking on ‘Condition History’ in the menu bar on the left hand side of your My Profile page. Once you click through to your Condition History, you’ll see a link on the top left that says ‘Add Conditions.’

This takes you to a search page where you can search for your condition or browse for existing ones. If your condition does not appear in our drop down search results, you can click the prompt below called ‘Add this as a new condition.’ You’ll receive a green prompt at the top of the page that says ‘You have successfully added this to your profile. A PatientsLikeMe staff member will soon review your addition and add it to our global condition list. You will receive a private message when this process has been completed, and you will be able to add details and to monitor that condition."
How do I delete a condition from my profile?

You can delete a condition from your profile by clicking on ‘Condition History’ in the menu bar on the left hand side of your My Profile page. Once you click through to your Condition History, select which condition you'd like to delete. You can then choose ‘Delete this condition’ on the bottom. If you have associated treatments, we'll ask you about those, too.
How do I stop monitoring a condition?

You can indicate that you do not want to monitor a condition by clicking on 'My Profile' and then 'Condition History'. At the bottom of your condition history page, you'll see the question "Would you like to continue updating the progression of this condition on your profile?" and can select "No, I just want to tell you I had it, but don't really want to chart any changes" or "No, this condition has gone away or was misdiagnosed." If you select the latter, you'll have the opportunity to indicate how it was resolved or what new diagnosis you may have.

We will show you the resolution reason on the header of your profile page.

and you can search for people on the patients tab whose conditions have resolved.

You will no longer be asked about the associated symptoms or outcome scores.
How do I choose a primary condition on my profile?

You can choose a primary condition by clicking on ‘Condition History’ in the menu bar on the left hand side of your My Profile page. Once you click through to your Condition History, click on ‘Set my primary condition.’

Your primary condition is the one you want to focus on the most and/or has the biggest impact on your health. Your primary condition will appear in your patient nugget, the header of your profile, and determine what you need to earn three stars. You can change your primary condition at any time.
How do I add a treatment?

You can add a treatment by clicking on ‘Treatments’ in the menu bar on the left hand side of your My Profile page. You might be prompted to answer some questions about whether or not you're taking any commonly prescribed treatments for any of the conditions you've added first.

Once you get to your Treatments page, you’ll see a link called ‘Add new treatments’. This takes you to a search page where you can search for your treatment or browse for existing ones. If your treatment does not appear in our drop down search results, you can click the prompt below called ‘Add this as a new treatment’.
How do I update, edit or delete a treatment?

It is easy to update, edit or remove a treatment from your treatment history page.

To update, change or delete information that you've entered about a treatment, look for the ‘Action’ button to the right of that treatment name. Clicking on it will show you a menu of options including: 'Add New Dosage', 'Edit/Add Purpose', ‘Delete this treatment’, etc. You can also click on the treatment name. That will take you to a treatment history page where you'll also see that same menu of options.

If you do decide to delete a treatment, please be aware that everything associated with it, including side effects and any treatment history data you’ve shared will also be erased.
Why do you want me to share what treatments and dosages I've tried before?

You may have noticed that we ask you to list medications on your profile that you used to take, but have since stopped. When you enter a previous prescription treatment or dosage, that information gets added to the PatientsLikeMe community treatment reports, which other patients use to learn more about treatments and understand their own experiences. If you stopped a drug because of its cost or side effects, that's useful information to share.

The more you share about your experience with a treatment, the more other members and researchers can learn about how this treatment is acting in the real-world.
How do I add symptoms and side effects?

You can add a symptom or side effect by clicking on ‘Symptoms & Side Effects’ in the menu bar on the left hand side of your My Profile page. Once there, you may be asked to update your symptoms if you haven’t done that in awhile. Once your symptoms are up to date, you can add a new symptom or side effect by clicking on the yellow ‘+Add’ button.

This takes you to a search page where you can search through a list of symptoms and side effects. If you can’t find the symptom or side effect you are looking for, you can add it as a new symptom or side effect by following the drop down prompt in the search field.
How do I delete a symptom or side effect?

You can delete a symptom or side effect by clicking on ‘Symptoms & Side Effects’ in the menu bar on the left hand side of your My Profile page.

For symptoms, find the name of the symptom you wish to edit or delete and click on it. This will take you to a symptom history page where you can delete any symptom history information you had for that symptom. This will remove the symptom from your profile.

For side effects, scroll down to the treatment you’ve attributed the side effect to and click on it. This is your treatment history page. Scroll down to the treatment history log and delete any entries made on the side effect you wish to delete. This will remove the side effect from your profile.
Why did I receive a message telling me that one of my symptom or side effect entries has been changed?

The database of symptoms, side effects, hospitalizations and treatments we use on PatientsLikeMe has been mostly created by patients. We try to balance the unique patient voice with the ease with which patients can share similar experiences. In order to do this, we organize and code existing entries and try to consolidate very similar or duplicate entries, sending you a message letting you know we’ve made a change on your profile and allowing you to review the change. Some reasons we might consolidate entries are: if it is misspelled, if it already exists in our database, or is the same as an existing entry but perhaps worded slightly different (ie. ‘Pain in toes’ and ‘Toes hurt’).

We welcome any feedback and encourage you to review your profile if you do get a message letting you know we changed something.
How reliable is the information about symptoms and treatments?

Like all information you find on the web or elsewhere, it is important to carefully compare it against many other sources. Our symptom and treatment reports reflect data that have been entered by the community. They cannot be guaranteed to be accurate, and they are not intended to represent complete information about a treatment, symptom, or condition.

You should use PatientsLikeMe as one more source of information in your quest to manage your disease. But always consult multiple information sources and, of course, your doctor.
How do I delete data from my profile?

You can delete (or edit) your personal profile or health information (e.g., picture, treatments, symptoms, outcome scores, etc.) at any time by clicking on the menu options (highlighted in blue) on the left-hand side of your ‘My Profile’ page. Within each of those sections there are options (delete buttons on some pages and text links on others) that you can use to delete specific entries.

For more details, see the following FAQs:
How do I delete a condition from my profile?
How do I update, edit or delete a treatment?
How do I delete a symptom or side effect?
What is a Doctor Visit Sheet and how do I get one?

The Doctor Visit Sheet (DVS) is a PDF you can email or print out and bring with you to an appointment with your health care provider. It’s a great way to keep them up to date with what’s been happening with you in between visits.

To get a copy of your DVS, click on the button on the top right hand corner of your profile charts to go your DVS page. The charts that appear on your DVS reflect what’s on you’re My Profile page. You can close any charts you don’t want to include. You can also use the timeline to capture the exact time period you want to discuss with your doctor.

You’ll need to have Adobe Reader installed on your computer to view and print PDF files. You can find out more about how to install Adobe Reader in our Technical Support section.
Can my doctor access or update my PatientsLikeMe information?

We hope that someday doctors will be able to directly access or update your PatientsLikeMe information (with your permission). If your doctor is interested in using PatientsLikeMe to access your information, please contact us and let us know.
What is a CareTeam?

Your CareTeam at PatientsLikeMe is meant to include people who are actively involved in your care. It could be your doctor, a home health worker, a spouse, parent, child or close friend. If you want to invite someone to be part of your care team, click the "Invite Someone to Join" button on your profile, or the 'Invite a Friend' link at the bottom of every page on the site.

People on your CareTeam can't see your account information (your name, email address, etc.) but are linked to you on your profile, so you want to be sure it is someone who actually knows you and is involved in your care in real life. If you get a message from someone you don't know asking to be part of your CareTeam, we recommend that you decline that invitation.
How do I invite someone to join my CareTeam?

To add someone to your CareTeam they first must be a member of the site. You can invite someone to join PatientsLikeMe on your profile page.

Once they are registered, you can invite them to become a member of your CareTeam. When you do this they will be sent an invitation. They will only become part of your CareTeam if they respond to that invitation.
I'm a caregiver, why do I have profile charts?

All PatientsLikeMe members (with the exception of doctors, researchers and staff) have the same profile tools available to share information about their health. You're welcome to share as much or as little as you'd like. Without specifying a condition, you won't be able to earn stars, but you can still use InstantMe and Quality of Life to let others know how you're doing.
How do I let other members know I'm a caregiver?

You can indicate that you're a caregiver in four ways:

-You can tell others a bit about yourself in the 'about me' section of your profile
-If your patient is on the site, you can join their CareTeam
-You can join any forum room as a 'caregiver' with or without specifying a PatientsLikeMe member
-You can contact support@patientslikeme.com to add a 'This account is maintained by a caregiver' badge to your profile