condition

Getting to know our Team of Advisors – Karla

This past Monday on the blog, Emile shared about her fibromyalgia and what being a part of the PatientsLikeMe Team of Advisors means to her, including how she hopes to help doctors understand that patients need to be treated as individuals, rather than just disease names. Today, we’re featuring Karla. She’s also a member of the Team of Advisors living with fibromyalgia as well. Read below to learn Karla’s views on patient-centeredness, open communication and healthcare in a rural community. About Karla (aka kam-turtle) Karla refers to herself as a Southern Gram, who tries not to let her fibromyalgia get in the way of having fun with her grandkids. Karla served as president of a community college prior to retiring from full-time employment in 2010. She has led volunteer boards and fundraising groups, worked in public relations and advertising, and actively worked in a variety of roles in her church. She continues to work part-time as a grant writer, researcher, and owner of a chicken farm where she has a rooster named Handsome. 🙂 After spending a long time finding treatments that worked for her, Karla is passionate about helping others shorten the time between diagnosis and condition management, and she would like there …

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“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS

PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit places like the Grand Canyon, and she shared all about her life in a PatientsLikeMe interview. Read below to learn about her personal journey.  What was your diagnosis experience like? What were some of your initial symptoms? I was diagnosed in 2008 at the age of 66 but, looking back, had definitely exhibited symptoms in 2007 or earlier. I had retired a few years prior, after a long career in Human Resource Management that included positions in the fields of health care, the Federal government, higher education (Northeastern University), and high technology (the former Digital Equipment Corporation).  But, rather than slow down and enjoy retirement, I started a second career in tax and financial planning. I became an IRS Enrolled Agent (EA), earned a Certificate in Financial Planning, and obtained my securities and insurance licenses.  I started my own business as a tax and financial …

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What do you know about cervical cancer?

January is Cervical Health Awareness Month, but it’s not just a month to learn more about cervical cancer, it’s about learning how to prevent it. Since the 1950s, there’s been in increased effort to raise awareness for prevention screening, and from 1955 to 1992, the cervical cancer incidence and death rates declined by 60 percent.1 But there’s still work to be done, as the NIH estimates that over 12,000 women will still be diagnosed with cervical cancer in 2015.1 Our own Priya Raja spoke about cervical cancer awareness on the blog about a year ago, and she stressed the importance of Pap smears and making them available to all women around the world. During January, the awareness focus will be on preventative screening as well as cervical cancer itself, because as Priya said, “being screened just once can reduce the likelihood of having cancer.” You can learn more by checking out the National Cervical Cancer Coalition’s website and the Center for Disease Control and Prevention’s infographic on cervical cancer (featured to the right). And if you’ve been recently diagnosed with either HPV or cervical cancer, reach out to others like you in the PatientsLikeMe community. Share this post on Twitter and …

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Seeing [MS]: The invisible symptoms – fatigue

“It’s like I’m deflated. I don’t feel like doing anything.” That’s how Darcy McCann says he feels on most days. He’s a young Australian who was diagnosed with multiple sclerosis [MS] at the age of 10, and his most debilitating symptom is fatigue, which comes and goes as a result of his nerves being constantly under siege.   You are now seeing fatigue Photographed by Juliet Taylor Inspired by Darcy McCann’s invisible symptoms Darcy worked with award-winning photographer Juliet Taylor to capture how he feels when enduring bouts of fatigue. His video and picture are part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

Seeing [MS]: The invisible symptoms – dizziness

Lyn Petruccelli is living with multiple sclerosis, and she fights random waves of vertigo and dizziness that can strike her at any moment. Sometimes, the feelings are so strong, she can’t even get out of bed. As Lyn says, “I can’t see it coming, and that makes it hard to fight.”1   You are now seeing dizziness Photographed by Louis Petruccelli Inspired by Lyn Petruccelli’s invisible symptoms Lyn’s husband Louis is an accomplished photographer, and they worked together to visually portray what it’s like to live with the possibility of dizziness every day. Their photograph is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS. 1 http://www.seeingms.com.au/ms-stories

Seeing [MS]: The invisible symptoms – spasticity

Australian comedian and public speaker Tim Ferguson said it the best – “Seeing [MS] is all about helping everybody, in society, right across the world, get their heads around this mysterious and sometimes scary condition.” He’s living with multiple sclerosis (MS), and he spoke about his spasticity in the video below.   You are now seeing spasticity Photographed by Matt Hoyle Inspired by Tim Ferguson’s invisible symptoms He worked with photographer Matt Hoyle to visualize his spasticity as part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign. It’s all about shining a light on the invisible symptoms of MS and raising awareness for the neurological condition – check out the previous pictures and stay tuned for more Seeing [MS] posts. Share this post on Twitter and help spread the word for MS.

“I just kind of went on with life.” – PatientsLikeMe member Fred shares his experiences with MS

We’ve interviewed a lot of members on the blog over the years, and each has a different perspective on life with MS. Fred1118 has taken sharing about his life with MS to a whole new level, documenting his life in a personal photoblog and posting the pictures with the world online. Fred shared all about his experiences in a recent interview, everything from his handicap-accessible house to how physical therapy helps him stay mobile. Read his story below. What went through your mind when you were diagnosed with RRMS back in 1994? I didn’t really know too much about MS at the time. I’m not sure if I had even heard of it, so didn’t know what to think. The diagnosing neurologist said, “you have a mild case of MS.” I was young and carefree at the time and didn’t really worry about it too much. I kind of just went on with life. It looks like you’ve done a lot of work on your house to make it handicap accessible. What are some tips and tricks you can share with the community? I would say that everyone’s needs are different. It’s a good idea to have an occupational therapist that …

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The Theory of Everything

Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in a biographical movie coming out very soon. “The Theory of Everything” is about the life of renowned physicist Stephen Hawking, who has been living with ALS since the 1960s. Despite being given a grim diagnosis, he defied all odds and became one of the leading experts on theoretical physics and cosmology. Stephen Hawking’s story reminds us of the reality of ALS, but is also an inspiration to all who are living with motor neuron disease. The movie premieres on November 7th in the U.S. – check out the trailer below.   As many out there might already now, movies like “You’re Not You” and “The Theory of Everything” hit close to home for the PatientsLikeMe family. In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was diagnosed with ALS. Their experiences – as a patient, as caregivers, and as a family led …

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A decade of psoriasis awareness

Today marks the ten-year anniversary of World Psoriasis Day, a day with four goals: raise awareness for the condition, improve access to treatment, increase understanding of known information and build unity among the global psoriasis community. And after ten years of raising awareness, it’s time to step it up a notch. Tomorrow, the International Federation of Psoriasis Associations (IFPA) is going to create a tidal wave of awareness on social media with their “Thunderclap” campaign. Join in here or click the sidebar on the right. When you join the movement, a World Psoriasis Day message will automatically be posted on your Facebook, Twitter or Tumblr account at 12:00pm Central European Time (7:00am on the east coast). You can share your own message with the #psoriasis and #WPD14 hashtags as well. Check out some of our past posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews (with Maria, David and Erica) and what doctors Jerry Bagel and Steve Feldman had to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe – more than 4,800 people are sharing their experiences and stories with each other. Share this post on Twitter and …

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Getting to know our 2014 Team of Advisors – Lisa

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa.  About Lisa (aka lcs) Lisa’s recent work experience was to help healthcare providers improve care delivery working for Cerner Homecare, a home health/hospice software solution, and Press Ganey, a patient satisfaction measurement/improvement organization. She is very knowledgeable about providers/systems and the flaws in the system. She was diagnosed with Parkinson’s disease (PD) in 2008, and just recently stopped working as a full time executive due to non-motor PD symptoms like loss of function, mental fatigue and daytime somnolence, and she is now a volunteer at National Patient Advocate Foundation, and a Mom whose daughter just got married in June.   Lisa on being part of the Team of Advisors “When we had our first in-person meeting in Cambridge, we were a group of strangers who had no idea what to expect. We quickly learned we were connected by our common experiences and our passion to improve the patient’s experience. I think we were …

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