11 posts from September, 2012

Today’s Photo: 2012 Ride for Dads in Minnesota

Posted September 28th, 2012 by

Earlier this month, we shared a video interview with PatientsLikeMe member Wayne Sticha, who founded the Ride for Dads in 2010 to raise awareness of prostate cancer.

Since September is National Prostate Cancer Awareness Month, we wanted to close out the month by sharing one of Wayne’s photos from 2012 Ride for Dads, which involved approximately 70 motorcycles, made five stops throughout Minnesota and generated $1,100 for the Prostate Cancer Foundation this summer.  PatientsLikeMe was proud to support this community event with a monetary donation and bright blue PatientsLikeMe t-shirts as part of our PatientsLikeMeInMotion program.

Wayne and Team in Their PatientsLikeMeInMotion T-Shirts

Congrats to Wayne and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection.

Thinking about organizing a team – or even founding an event like Wayne did?  Learn more about the PatientsLikeMeInMotion program today.


PatientsLikeMe at Medicine 2.0

Posted September 26th, 2012 by

With more than 500 attendees from 36 countries, the 5th Annual Medicine 2.0 World Congress took place September 15-16th at Harvard Medical School here in Boston.  Among these attendees were several PatientsLikeMe leaders, including keynote speaker Jamie Heywood and conference presenters Sally Okun and Paul Wicks.

The 5th Annual Medicine 2.0 Congress Took Place in Our Home City of Boston

In an unusual twist, all three PatientsLikeMe speakers got to present back-to-back, starting with Co-Founder and Chairman Jamie Heywood’s opening keynote about how his brother Stephen’s experience with ALS shaped his understanding of basic concepts like health, well-being and disease.  He then shared how PatientsLikeMe was founded to help patients like Stephen record and share their symptom and treatment data in a way that is meaningful to them, other patients and researchers. “Human networks are connecting information and data in ways that have never before existed,” he told the crowd.

Next to speak was Dr. Paul Wicks, our Research & Development Director, who gave a presentation entitled “But Will It Scale?  Lessons in Growth from PatientsLikeMe.”  He discussed how PatientsLikeMe evolved from a data-sharing platform for patients with a single disease – ALS – to a general platform serving more than 160,000 patients with more than 1,300 health conditions and a myriad of symptoms.   Important lessons covered included streamlining the research processes, refining the medical ontology and adjusting the business model.

Finally, PatientsLikeMe Health Data Integrity Manager Sally Okun – whose talk was entitled “Patient Voices:  The Power of Shared Knowledge” – then looked at some of the challenges of turning individual stories into shared knowledge.  One of the biggest hurdles:  how do you capture the patient experience in clinical terms, given that patients don’t speak this way?  For example, instead of talking about a “gait disturbance,” patients might report that they are stumbling, limping, dragging a foot or “walking like a drunk.”  (In fact, Sally shared that PatientsLikeMe members have used 35 different terms for this one clinical concept.)

What was the reaction to this trio of talks?  Sally reports, “I think the juxtaposition of Jamie, Paul and me speaking was quite effective.  Our commitment to capturing and honoring the patient voice certainly resonated with the people I spoke with.” Another way to gauge the response – and certainly an apropos one given the conference’s focus on social media – is to examine the Twitter activity generated by these presentations. Here are a few of the 7,000+ (!) Tweets associated with the conference hashtag #med2 that gave shout outs to PatientsLikeMe:

Click Here to See Cassie's Very Cool Sketch!

A Quote From Jamie Heywood's Keynote Address

Sally Okun's Poem Resonated with Susannah Fox and Others

This Quote in Jamie's Talk Got a Lot of Attention

We Like These Big Important Questions About PatientsLikeMe!


What We’ve Uncovered About Psoriasis in the Summertime

Posted September 24th, 2012 by

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Uncovering Psoriasis 2012 Summer Survey

Are people with psoriasis more likely to cover up with pants and long sleeves in warm weather?  Or are they okay with “showing some skin” in shorts and tank tops?  This is just one of the things we set out to learn in our seasonal survey of more than 300 members with psoriasis, a chronic autoimmune condition.

Participants ranged in age from 10 to 80 years old (with an average age of 43), and 68% of them were female.  What did they have to say?  In response to some of our more playful questions, 62% of participants said they are okay with “showing some skin” in the summer, and 32% said that summer made them “happy as a clam.”  Conversely, 14% said it made them “cranky as a crab,” while 54% said it was a little of both.  What might be causing that crankiness?  49% of respondents reported that bug spray was the biggest skin irritant in the summer, with 30% citing sunlight itself and 22% pinpointing sunscreen.

How PatientsLikeMe Members Responded to the Question, "How Does Summer Make You Feel?"

We also asked some important research questions about how psoriasis affects quality of life, including social activities, sports, personal relationships and more.  These important lifestyle factors were captured using the Dermatological Life Quality Index (DLQI).  Internally, PatientsLikeMe refers to DLQI ratings as a person’s “skinpact” because it quantifies how much of an impact psoriasis can have on your lifestyle.

To share what we learned, we’ve put together a new Patient Voice report entitled Uncovering Psoriasis.  Don’t miss this in-depth look at how our psoriasis patients rate their “skinpact” as well what specific factors can increase it, from age to the location of an outbreak to the percentage of the body covered with itchy, red plaques (a measurement known as the Body Surface Area or BSA score).  You’ll also find tips and insights shared by our patients for coping with psoriasis during summer.

Click Here to Read/Print Our Free Report, "The Patient Voice:  Uncovering Psoriasis"

Like digging into the data and learning directly from patients?  Check out our previous Patient Voice reports on preparing for life after an organ transplant and getting the most out of inpatient psychiatric therapy.

Want to connect and learn from psoriasis patients like you?

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A Day in the Life of PatientsLikeMe Quality Assurance Engineer Brian Boyle

Posted September 19th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features employees from different departments.  So far, we’ve interviewed User Experience Engineer Cris NecocheaResearch Assistant Shivani Bhargava, Office Manager Alison DuttonResearch Scientist Timothy VaughanBiz Dev’er Arianne GrahamProduct Manager Maureen Oakes and Community Manager Jeanette DeVita.  Today we’d like to introduce you to Brian Boyle, who joined the company six months ago to help us maintain excellent quality assurance (QA).  What that means is that when you find a bug in our platform, Brian is the guy who makes sure it gets fixed!

PatientsLikeMe Quality Assurance Engineer Brian Boyle

1.  What’s surprised you the most since joining PatientsLikeMe in March?

PatientsLikeMe is an amazing office to work in. I was immediately welcomed by a team of talented and brilliant individuals. The people here are so nice to be around. The bar of excellence is raised daily, and we challenge ourselves to produce the best possible product. Every morning I arrive to an atmosphere that is rich with confidence and satisfaction of our product.

2.  Tell us about the role of the Quality Assurance (QA) Engineer.

My job at PatientsLikeMe is to collect bug reports from users and co-workers and send them to the engineers. The engineers take the information, locate the problem and fix the code that caused the error. When I collect the bug reports, I research what is causing the problem and prioritize the bug queue. The bugs on my radar are ones that a user would find and that could disrupt their experience on the site. Solving these problems is very rewarding and important for the user experience.

3.  What do you find satisfying – as well as challenging – about your job?

Working closely with users to understand their perspective and then carrying that viewpoint to the engineers is my first priority. It can be challenging working through the volume of requests and researching all of them, while putting them in an acceptable order to be fixed. Fortunately, the engineers are very helpful, offering insights and understanding. I sit with a team of amazing developers I can turn to and ask for help. Working with the engineers to solve problems is immensely satisfying.

4.  I understand you have a lot of active hobbies, such as rock climbing and skiing.  How does that fit into your approach to wellness?

I have found that engaging my mind and body in physical activity encourages a healthy perspective to my thought process. My time away from work is spent working on goals and physical challenges. I have a few different levels of activities that I use to distill my thought process and better serve my prioritization skills.

Brian Boyle Doing His Favorite Activity:  Skydiving

Skiing and team sports are hobbies that I do every once in awhile that allow me to focus on something new for a day. The next level of activities are accomplished a few times a week; rock climbing, yoga, mountain biking and road biking are things I can do after work. My favorite activity is skydiving. I have been jumping out of planes (almost) every warm weekend since 2007. I have over 550 jumps, and I am a tandem instructor at Jumptown in Orange, MA.

My passion in skydiving is tandem jumping and big way jumping. Tandem jumping is hooking up a first jump student to my parachute and taking them on their first skydive. Big way jumping is when I take my own parachute and go up with 60 of my closest friends and jump out of three different airplanes at the same time. I use skydiving to set long term goals. It can take years to attain certain skills in skydiving, and accomplishing those goals is very rewarding.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Marketing AnalystOutcomes Research Scientist and more at the moment.


How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay

Posted September 17th, 2012 by

Want to connect with and learn from others with ALS?
Join PatientsLikeMe Now! (It’s free)

“Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies.  Sites like PatientsLikeMe, Facebook and other ALS sites allow me to discuss issues, share experiences, research new treatment options and keep up to date on the latest research.”

ALS Patient Susan Speranza

ALS Advocate and Essayist Susan

This summer, the Mayo Clinic Center for Social Media sponsored an essay contest for patients and caregivers focused on how they use social media.  The prize?  A scholarship to attend the Social Media Summit, held October 15-19, 2012, in Rochester, Minnesota.

36 essays were submitted, more than 11,000 votes were tallied, and ultimately three scholarship recipients were chosen.  While PatientsLikeMe member Susan Speranza (Susan702) was not among the finalists, we wanted to spotlight her inspiring essay about how social media has become an invaluable part of her life since her diagnosis with ALS (Lou Gehrig’s disease) in July 2011.

Here’s an excerpt describing the aftermath of her diagnosis:

“Last year I was given this diagnosis at the age of 47. I was living a busy, wonderful life with my husband and two children, working as a Physician Assistant (PA) and had just started a PhD program in Public Health. Of course when I went to the neurologist’s office that morning, I already knew it could be nothing else: The Dreaded Disease! After spending the last 20 years practicing medicine and several weeks feverishly searching every website I could find looking for a benign cause, I knew it could be no other. My life came to a screeching halt on that day and I spent the next few weeks isolated, depressed, hopeless, wondering ‘Why Me?” and worrying about the tremendous burden I had just imposed on my family. I desperately needed to adjust my ‘new life’ to this ‘new reality’. Fortunately, social media helped with that adjustment.”

Read Susan’s full essay here and follow this budding ALS advocate on PatientsLikeMe and Twitter.

Want to connect with and learn from others with ALS?
Join PatientsLikeMe Now! (It’s free)


How Social Media Is Changing Research (Part II): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Posted September 13th, 2012 by

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

Read Part I of Jeri’s guest post first!

MS Patient, Blogger and Activist Jeri Burtchell (TickledPink at PatientsLikeMe)

Because blogging a clinical trial from start to finish was unheard of, I attracted the interest of not only patients, but those in charge of clinical trials. They are interested in the impact of social media on clinical trials, and how they can utilize it to their benefit. Sites such as personal blogs, FacebookTwitter, and PatientsLikeMe are here to stay and people naturally want to share information.

I got a direct message on Twitter from Craig Lipset, who is Head of Clinical Innovation, Worldwide Research & Development for Pfizer. Social media brought us together to have a conversation about research that never could have taken place before the Internet. Everyone is more connected and approachable now. Naturally, I blogged about it.

But that was just beginning.  Tomorrow, September 14th, at 9:45 a.m. , I will be speaking along with Craig at the Disruptive Innovations conference, where the leaders in pharmaceutical research will be gathering to share ideas and come up with innovative ways of conducting clinical trials that take the “ePatient” into consideration. The 30-minute segment is entitled “Patient Leaders as Key Stakeholders in Clinical Trials,” and I will be there to represent – and put a human face to – clinical trial patients everywhere.

Knowing this is a chance of a lifetime for a trial patient to have the researchers as their audience, I wanted to reach out to those who have participated in past or current trials. My question to them is: “If you could ask or tell researchers just one thing about your own experience as a trial patient, what would that be?”

I plan to attend this conference and speak on behalf of all patients and put a face to the humans behind the data. I want to show them that we are connected now more than ever by social media. Researchers need to harness that power to their benefit. Soon they may use it to recruit and retain trial participants. I would like to see them provide a monitored gathering place for these trial patients to reduce the spread of misinformation as patients share data.

How Many of the 35,000+ Clinical Trials Currently Recruiting Do You Qualify for?  Use PatientsLikeMe's Clinical Trials Search Tool to Find Out!

To people who are considering a trial I recommend using tools like PatientsLikeMe and ClinicalTrials.gov to stay informed about ongoing research and find a doctor willing to support your interest in participating. Remember that not every trial will culminate in a drug that wins FDA approval. By joining a clinical trial you will be taking risks, but you may also be reaping benefits long before the general public will have access to the drug. Never forget that you are a pioneer and by entering a trial you are giving the greatest gift possible. Without volunteers we would have no medical advancements.

I hope that researchers never forget the impact they are having on the lives of people everywhere. They aren’t just going to work every day; they are the makers of miracles. Often patients are joining these trials as a last resort. The work of researchers gives us all promise for a brighter future.

I hope that patients everywhere will take one clear message away from this: NEVER GIVE UP! It would have been so easy that day to end it all. I was depressed and certain my life could get nothing but worse. But, by choosing to fight, I have changed my life forever and doors continue to open for me. By reaching out through social media I know I am not alone. You never know what tomorrow may bring, so don’t give up on today!

Editor’s Note:  Jeri isn’t the only PatientsLikeMe member blogging about her experience in a clinical trial.  See our interview with PGen study participant PF Anderson for another patient’s chronicle!


How Social Media Is Changing Research (Part I): A Guest Post by MS Clinical Trial Participant and Blogger Jeri Burtchell

Posted September 12th, 2012 by

Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years.  A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me:  My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.”  Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.

MS Patient, Blogger and Activist Jeri Burtchell (TickledPink at PatientsLikeMe)

One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity.

I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down.

Deciding against suicide, I made some proactive choices that led to my meeting with the lead investigator of the Fingolimod (now marketed as Gilenya) clinical trials in Jacksonville, Florida. At my first appointment we discussed the Fingolimod trial called TRANSFORMS. I took the informed consent document home and went over all the risks and benefits with my family. After extensive baseline testing, I officially started the trial on August 20, 2007, a.k.a. “Randomization Day”, when I received my first dose of medication. I would return for regular testing many times over the next several years.

Joining the trial changed my life. I was very fortunate that I did not suffer any major side effects, and I am happy to say that my last MS attack to date was the very one which led me to contemplate suicide that day in April 2007.

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I was fascinated by the research during the trial. They did a lot of testing, and I have never felt more assured that my overall health was being tracked, observed and cared for as I did in the clinical trial. Since I did not have medical insurance, this was a plus on top of benefits I might be getting if on the real drug.

When the trial began, I wanted to know what to expect. I tried searching the Internet for a clinical trial from a patient’s perspective and could find nothing. I decided to share my experience with the world so others considering a trial might have their own fears put at ease. Thus my blog, www.gilenyaandme.com, was born.

I blogged all of my checkups and along the way something unexpected happened. Many people wrote to thank me for being the reason they felt able to overcome their own fears and join a clinical trial. We began connecting and sharing our personal experiences in a way only the Internet could enable.

Read Part II of Jeri’s guest post!


Add Your Voice During National Recovery Month

Posted September 10th, 2012 by

National Recovery Month Takes Places Every September

Are you in recovery from an addiction or mental health disorder – or do you know someone who is?  The theme for National Recovery Month 2012, sponsored by the Substance Abuse and Mental Health Services Administration (SAMHSA), is “Join the Voices for Recovery: It’s Worth It!”

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:

Exchange stories and tips – as well as in-depth treatment evaluations – with those who can truly relate today.


The Ride of His Life: An Interview with Prostate Cancer Survivor Wayne Sticha

Posted September 7th, 2012 by

“I wanted to share my story to, frankly, save other men’s lives.  I discovered that very few knew anything about [prostate cancer].  Even less had had the PSA test.”

Wayne Sticha, 64, Founder of Ride for Dads

Over the summer, we shared two interviews with PatientLikeMe members conducted by our partner Patient Power:  one with psoriasis patient Lissa and another with multiple sclerosis patient Marcia.  Today, against the backdrop of National Prostate Cancer Awareness Month, we’re pleased to present the latest Patient Power video interview with member Wayne Sticha, a prostate cancer survivor from Lindstrom, Minnesota.

Check out Wayne’s interview to learn about his prostate cancer experience as well as how he was inspired to found Ride for Dads, an annual benefit and awareness motorcycle ride now in its third year.  What drives his passion for educating other men, who he says “tend to ignore the subtle signs of aging,” about prostate cancer?  And what are his aspirations for this growing event?  Hit “play” below to find out.

Wayne Sticha: Prostate Cancer Survivor Turned Advocate from Patient Power® on Vimeo.

Stay tuned for a post featuring one of Wayne’s photos from the 2012 Ride for Dads as well as the next installment of the Patient Power interview series.


Snapping the Glove on Prostate Cancer Awareness: An Interview with Dan Hennessey

Posted September 5th, 2012 by

Canadian Dan Hennessey (Goalie at PatientsLikeMe) started out as a prostate cancer patient.  Today, following successful treatment, he is not only a prostate cancer survivor, but an author, speaker and activist in the prostate cancer awareness movement.  In honor of National Prostate Cancer Awareness Month, we’ve interviewed Dan to learn about his experience and find out what led him to dedicate his life to bringing more attention to the condition, which is diagnosed in more than 240,000 men in the US each year, according to the American Cancer Society.

PatientsLikeMe Member Dan Hennessey, a Prostate Cancer Survivor, Author, Speaker and Activist

1.  Tell us about your four-year battle with prostate cancer.

It has been an incredible journey for me to go from an active 49-year-old who played at least three games of hockey a week, ran, played golf and was the father of a grown daughter and a little one that was just about to turn one year old, to a man that received the diagnosis that I had prostate cancer.

I had no idea what a prostate was and had also never ever taken the time to find out or ask my doctor to find out. This all changed when I changed doctors and the new one did not take no for an answer. He referred me to a urologist shortly after my first visit and within two months the diagnosis was delivered.

In March 2006, I underwent a radical prostatectomy and an additional 33 beam radiation treatments to ensure that nothing had moved outside the prostate. The recovery was far from normal because the day before I had my surgery on March 3, 2006, my mother was admitted with terminal lung cancer and sadly passed away three months later while I was still undergoing radiation. The day of my surgery my wife, who was pregnant with our second child, discovered the day of my surgery that she has lost the baby and delivered the devastating news to me in hospital. So as you can see, no recovery is normal because cancer has no conscience and does not care if life is good or bad or what you are going through.

2.  What led you to write your book?  And what kind of impact has it had?

Since the treatments have ended, life has returned to as normal as it can be with some changes. We have since had another daughter through in vitro fertilization (IVF) because of plans we made prior to my surgery, which now seems to have been a great decision. I also felt the need to write my thoughts down as a way of recovery, but the deeper I got into the telling of my story, I thought that reading what I went through might in fact help others so I decided to publish my little rant.

The Book Cover of "With the Snap of a Glove," by Dan Hennessey

The book – entitled With the Snap of a Glove – is a mix of sad and happy and I have had people say that they have laughed and cried while reading my book. Humor, I have found while speaking about my experiences, allows people to become more at ease with the subject matter. I have delivered the message to medical students, prostate support groups and major pharmaceutical companies and have been told on a number of occasions that they have never laughed so hard at such a serious subject but have also gotten so much out of hearing me speak. The book has sold over 4,500 copies throughout Canada and the US and has even made it to the UK.

Since releasing the book in 2010, I have continued to be an advocate for men’s health when it comes to dealing with prostate cancer. I have spoken about the importance of awareness and how it is directly tied to early detection of prostate cancer.  I have also participated in a video that was developed by a major pharmaceutical company that was designed to help newly diagnosed prostate patients and has been very successful to date. You can view it at www.ihaveprostatecancer.ca. My image has also been added to a traveling photo exhibit that toured Canada in 2011 and early 2012, and was designed to bring attention to prostate cancer.

3.  You’ve created an awareness video focusing on fathers and daughters.  Why?

I have developed a new prostate cancer awareness campaign video that is now available. It is focused on young people and using their ability to raise awareness about prostate cancer by simply having a talk with someone in their lives. I hope this will take education and awareness to a new generation. If you have any questions or would like to discuss this in more detail please feel free to contact me.

My goal is to have as many families see this video as possible with the hope that it might even save one life. This is not a Canadian or US issue, it is a global men’s health issue and needs to be talked about. The video has been viewed thousands of times through the use of social media and will actually presented to a series of high schools during the month of November to coincide with the Movember campaign.

My objectives for the video have three levels. The first would be for one of the people seeing the video to take immediate action and go talk to a man in their life about what they know about prostate cancer and what they need to do. The second is to educate and empower a new generation that will keep this knowledge and it will grow with them. The third objective is that anytime you can encourage conversation between children and their parents, this is a good thing. I have been quoted as saying, “We as parents should listen to our children to find out what we have taught them.”

4.  You’ve been cancer-free for six years.  How often do you see the doctor now?

Today I am feeling very well, but again, never quite the same as I was.  But life only gives you what you can handle. I see my urologist once a year and everything is exactly where it should be. Family life and the need to advocate for awareness are the things that give me strength. I was asked one time if I wished that I had never gotten cancer. That is a hard question to answer. I would not be doing the things that I am doing now and hopefully making a difference if not for prostate cancer. If I had not held the hand of the woman that gave me life take her last breath, I probably would not be driven as hard to make a difference. There are days that I want to stand up and yell out that prostate cancer picked on the wrong guy when it picked on me. The story will continue!


Know Your Score for Prostate Cancer Awareness Month

Posted September 4th, 2012 by

Prostate cancer affects 1 in 6 men in the US and is the second leading cause of cancer-related deaths among men.  As a result, it affects not just the men battling the disease but also their families, friends and communities.  That’s why the White House has declared September to be National Prostate Cancer Awareness Month.

Learn More About the ZERO Campaign to End Prostate Cancer

Fortunately, advances in diagnosis and treatment have led to a 40 percent reduction in prostate cancer deaths since the mid-1990s, and 90 percent of all prostate cancers are now discovered before they spread outside the prostate gland, according to ZERO, a nonprofit dedicated to ending the disease.  One of the key tools is the Prostate Specific Antigen (PSA) test, which tests for a certain protein made in the prostate gland.  Normally, very little should be found in the blood.  As a result, rising PSA scores may indicate a prostate problem, which could be cancer or an enlarged prostate.  Further testing with a biopsy or MRI is required to determine if abnormal PSA results indicate prostate cancer.

Who’s most at risk?  The most important factor is age, as the older you are, the more likely you are to be diagnosed with prostate cancer.  More than 65% of all prostate cancers are diagnosed in men over the age of 65, according to the Prostate Cancer Foundation, and the average age for diagnosis in the US is 69 years.  Race also factors into the risk, as African American men are 60% more likely to develop prostate cancer compared to Caucasian men and nearly 2.5 times more likely to die from it.  In addition, a family history (specifically, having a father or brother who developed the disease) doubles your risk of prostate cancer.

A Snapshot of the Prostate Cancer Community at PatientsLikeMe

Do you have a hard time getting to the doctor, perhaps because of your schedule or insurance situation?  Throughout September and into the fall, ZERO is offering free, confidential PSA tests via their roving testing trucks.  Stops include New York City, Baltimore, Costa Mesa, Phoenix, Tucson and Atlanta.  Check out the full calendar here.  If you’re already living with prostate cancer, connect with the 300+ members of PatientsLikeMe who report this condition and find out how 10+ of them evaluate prostatectomy as a treatment option.

For even more insight, check out our interview with prostate cancer survivor, author and activist Dan Hennessey.