11 posts from September, 2012

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

Posted September 17th, 2012 by

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“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.

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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!