Patient Choices: The Deciding Factors

In a recent series on patient choices, we’ve highlighted a lot of the decisions patients like you have to make on a daily basis.  A few weeks ago, David S. Williams kicked off the series with a blog about the treatment and career decisions that patients like you, and his mother, have made.  Kate Brigham… Continue reading Patient Choices: The Deciding Factors

Rare Disease Day 2011: “Rare, But Equal”

For patients with prevalent diseases, it may be easy to find others with your condition.  You meet them at clinics; you run into them when seeing your specialist; or you participate in one of the support groups in your area.  For those with rare diseases, the simple act of finding another patient like you isn’t… Continue reading Rare Disease Day 2011: “Rare, But Equal”

What Does it Mean When You Have Cold Legs?

If you’ve experienced cold legs yourself, we encourage you to share your experiences to help other patients. PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions, and lifestyle modifications that have helped you or simply had no effectHave you suddenly realized that your legs are cold? You’re sitting… Continue reading What Does it Mean When You Have Cold Legs?

What’s your experience with Cetomacrogol cream?

Used to treat dry, sensitive skin as well as eczema and itching, cetomacrogol cream FNA is a mitigating and protective skin cream.  It contains cetomacrogol (an emulsifying agent), cetiol (a fast-spreading dry emollient), sorbitol (a humectant and texturizing agent), water and the preservative sorbic acid. At PatientsLikeMe, where more than 120,000 patients are sharing their… Continue reading What’s your experience with Cetomacrogol cream?

Patient Choices: How Open Are You Now?

At PatientsLikeMe, we have a Privacy Policy that explains what we do with the health data that patients like you share.  But as many of you know, we also have an Openness Philosophy, which outlines what we believe are the substantial benefits of being open versus private about your condition.  Here’s an excerpt: “Currently, most… Continue reading Patient Choices: How Open Are You Now?

Patient Choices: The Shape of Sharing

In these days of Facebook and Twitter, the media is abuzz with news of “over sharing” of sensitive, personal or trivial information – everything from your current location to what you were up to over the weekend.  Members on our site may choose to share some of this, but what about some of the less… Continue reading Patient Choices: The Shape of Sharing

Are You Taking Asthmanex for Your Asthma?

Asthmanex is a brand name for the anti-inflammatory agent mometasone furoate, a corticosteroid used in various formulations (inhaler, intranasal spray or topical ointment) for the treatment of asthma and allergic rhinitis as well as inflammatory skin disorders such as eczema and psoriasis. A prescription inhalant drug marketed by Schering-Plough, Asthmanex – which is available as… Continue reading Are You Taking Asthmanex for Your Asthma?

The Social and Emotional Choices You Make Every Day as a Patient

As David Williams discussed in his blog on Monday, we all have to make choices. And for patients like you living with serious medical conditions, there are obvious treatment and career decisions that you have to make—finding the right doctor, deciding which treatment options to try and determining if it’s still possible for you to… Continue reading The Social and Emotional Choices You Make Every Day as a Patient

The Choices Patients Like You – and Like My Mother – Face

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake. I have watched my… Continue reading The Choices Patients Like You – and Like My Mother – Face