13 posts from March, 2012

Love Your Scars: An Interview with Transplant Recipient Amy Tippins

Posted March 30th, 2012 by

After five years of dealing with undiagnosed multiple hepatic adenomas (hemorrhaging tumors), PatientsLikeMe member Amy Tippins underwent a liver transplant in 1993.  Two years ago, she received a ligament allograft using donor tissue.  How does she feel about it all today?  Check out our interview with this transplant activist to learn how these experiences led her to found RockScar Love, a clothing company that celebrates sexy scars, the lessons they teach and the strength they create.

Amy Tippins, Transplant Recipient and Founder of RockScar Love and the "Scars R Sexy" Campaign

1.  Tell us about your post-transplant life today.

My life is amazing now.  When I was sick, I had goals of things I wanted to do over the years that I have started checking off my “accomplished” list.   I own my second house, I have learned how to surf, I currently do spin class for exercise, I own my own business.  My life has unlimited possibilities, and I am excited to see how I will continue to pay it forward.

2.  What led you to launch Rock Scar Love and the “Scars R Sexy” campaign?

I started RockScar Love Designs because I wanted to do something with my life that was inspiring.  When I was young and was coming out of my medical challenges I felt that I was “imperfect” and I had failed as a woman.  What I learned quickly was that imperfection was perfection!  That was what RockScar Love was for me….a way to spread that message and that belief.

One of the Scars R Sexy T-Shirts Created by RockScar Love

Scars R Sexy” is a campaign that came about through Live Wright Society and RockScar Love desiring to bring their two messages of “love your scar” and “pay it forward” to create a platform for people to tell their stories and show how they are making a difference in the lives of others.

3.  What kinds of scars and health conditions are represented in the campaign?

Any and all scars and medical conditions.  There is not a person on this planet who does not have some type of scar.  As a human race, most of our scars are on the inside.  I have my own collection of internal scars.  This campaign represents all of those scars – physical and mental.  If each person was a little bit more open with what they struggled with and what they have learned, then maybe the rest of society would struggle just a little bit less?

4.  I understand there’s a video contest planned.  How can our members participate?

Submit your “scar story” video to our Facebook page with “Scars R Sexy” in the link.  We will be uploading all of the videos to a website for public voting and will be posting very soon when the video contest voting dates will begin.  Watch our Facebook page!  Once the winning video story has been validated, then we will be awarding the winner with an iPad 2.


Today’s Photo: A Celebration of Solidarity

Posted March 28th, 2012 by

The weather is warming up, and calendars are filling up.  That means it’s time to starting thinking about spring walk/run events for your health condition!

For inspiration, please meet multiple sclerosis patient NewLife (center), who led a PatientsLikeMeInMotion-sponsored team at Walk MS in St. Louis, Missouri.  Including a monetary donation from PatientsLikeMe, NewLife and her team raised $2,000 for MS research.  The group also shared a delightful day together.  NewLife says, “I was very touched by the support of my friends walking with me.  It truly meant a lot.”

PatientsLikeMe Member "NewLife" and Team at the St. Louis Walk MS Event

Congrats to NewLife and all of our PatientsLikeMeInMotion-sponsored teams for your efforts to raise funds and awareness for your condition. We’re honored to support you every step of the way.  For more PatientsLikeMeInMotion team photos, check out our Flickr album.

Thinking about organizing a team for this spring or summer? Learn more about the PatientsLikeMeInMotion program today.


A Peek at the March Newsletter for Members

Posted March 27th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our March edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today

MONTHLY MUSINGS

Flare.  Exacerbation.  Attack.  Acute episode. These are a few of the different terms used to describe a multiple sclerosis (MS) relapse—which can last anywhere from 24 hours to several weeks to even months.

MS isn’t the only condition that has exacerbations, however.  This pattern is also common with fibromyalgia (FM), rheumatoid arthritis (RA), psoriasis, IBS, depression and more.  Just check out all the threads tagged with either “flares” or “relapses” across the forum.

A Quote from a PatientsLikeMe Member Regarding Her Personal Coping Trick:  A "Bad Day Box" of Favorite Items

How do you get through an attack?  In a recent discussion in the MS forum, suggestions included lots of rest, watching movies, a pinch of good humor, letting go of guilt, accepting help, pacing yourself, having easy-to-prepare food on hand, talking to your doctor and trusting that “this too shall pass.”

And in the FM forum, one patient has shared her unique trick: a “bad day box” full of uplifting items.

Got your own coping techniques?  The forum is all ears.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of the recent threads about flare-ups below.  Then jump in with your own questions and answers.

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

LABS, LABS AND MORE LABS

One of Many Labs You Can Add to Your PatientsLikeMe Profile

Things have gotten a lot more lab-tastic at PatientsLikeMe. Thanks to your requests and suggestions, we now offer some 200+ labs to help you monitor your health conditions.  Here’s a sampling of some of the new labs and tests you can add to your profile:

Wondering about another lab?  Search for it here.


What Do You Know About Endometriosis?

Posted March 23rd, 2012 by

March is Endometriosis Awareness Month, which means it’s a good time to brush up on this common women’s health problem.  For example, did you know that endometriosis gets its name from endometrium (en-doh-MEE-tree-um), the tissue that lines the uterus?  Or that this often painful condition occurs when that tissue begins to grow in other places, such as on the ovaries, fallopian tubes and pelvic cavity lining?  In rare cases, endometrial tissue has even been found in places like the lungs and brain.

In Endometriosis, the Tissue that Lines the Uterus Begins Growing in Other Female Reproductive Organs (and in Some Cases, Beyond)

More than five million women in the US have endometriosis.  It’s most common in women in their 30s and 40s, but it can occur in any teen or woman who has menstrual periods.  Symptoms include painful menstrual cramps, chronic lower back or pelvic pain, pain during or after sex, intestinal pain, infertility and painful bowel movements and/or urination during menstrual periods.  Interestingly, pain levels don’t align with the amount of endometriosis, though.  Some women have severe pain with only a few small growths.

The cause of endometriosis is unknown, but research shows a link between endometriosis and several other chronic conditions, including multiple sclerosisfibromyalgiachronic fatigue syndrome and lupus.  Endometriosis also appears to run in families, suggesting that it may be carried in the genes or that some families have traits that make them more likely to get it.  In other mysteries, scientists have not yet pinpointed how endometrial tissue travels through the body, although there are several theories.

Endometriosis Severity, As Reported by Members of PatientsLikeMe

Despite the unknowns, there are many things you can learn from the 400+ women who report endometriosis at PatientsLikeMe.  How are they coping?  Some commonly reported treatments include a conventional hysterectomylaparoscopic hysterectomy, Seasonique (a birth control pill that produces four periods a year), Mirena (an IUD contraceptive device) and the prescription drug Lepron Depot.  Click on each treatment to see how others evaluate the effectiveness, side effects, cost and more.  And if you yourself have endometriosis, share your experiences and connect other women like you today.


A Day in the Life of PatientsLikeMe Office Manager Alison Dutton

Posted March 22nd, 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 various employees from different departments.  So far, we’ve featured people like User Experience Engineer Cris Necochea and Research Assistant Shivani Bhargava.  Today, we share our interview with Office Manager Alison Dutton, who’s been keeping things running smoothly – and hilariously – for the past two years.  Find out what we learned from Alison about life at the epicenter of a startup.

alison-photo-2

1.  What’s it like being the Office Manager of a growing startup?

I have heard this particular question many times before and each time I give a different answer – all depending, of course, on how the previous day has ended. It can be incredibly exhilarating and at the same time exhausting mentally as well as physically. The important thing to note is that it’s never, ever dull.

Although this can be said for most positions in a startup, for me, I relish the spontaneity and craziness that ensues on a daily basis. I have had experiences with established companies that had more of a corporate culture. It is Groundhog Day all over again. Since I have a few startups under my belt, I am familiar with the energy, which is so addictive.  Everyone should try it once in their lifetime.

2.  You have such a great sense of humor.  Is that a requirement in your position?

The humor isn’t just a prerequisite for the job but also for life in general. I grew up the only girl in a household of boys, so I probably had to develop a sense of humor and thick skin a little quicker than most. As far as it coming in handy for my job – things change quickly in a startup environment and specifically with a job like mine, where one day you’re preparing for a board meeting and the next day you’re planning a company field trip to the local pub. You must be able to roll with it and maintain a smile throughout.

I find that being able to laugh at life – and at myself – helps me make the most of every day, whether I’m having a good one or a bad one. It also helps others relax when things get tense. It’s helpful that I tend to see things in a more positive light. After reading some of the patient profiles on our site, it reminds me of how lucky I am. I can stub my toe 10 times during the day and at the same time realize that I am wickedly overdrawn on my bank account and still laugh at myself.

What it boils down to is appreciating what you have – I am so dang lucky to come to work every day and be with the most remarkable people I have ever known.

3.  Give us a slice of life at the office.  What’s a typical day like for you?

I can always try to schedule my day, but it never truly goes according to plan. Today started with a call from someone trying to find our offices – she was driving from Logan Airport and had no experience with Boston drivers. She did eventually make it, although a little beaten up.

Learn More About the PatientsLikeMeInMotion Sponsorship Program for Disease-Related Run/Walk Fundraising Events

The remainder of the day would probably go something like this…first, check in with our amazing 3-Star and PatientsLikeMeInMotion programs for members. While monitoring that, start in on another job, which may entail booking travel for 3-5 employees, setting up a new employee or managing a build out (we have expanded our offices a couple of times). All the while I am answering random but important questions from employees.

At the same time, I try to maintain incoming invoices, scan resumes, work with marketing on our t-shirts, manage employee expenses, bark at people who don’t clean up after themselves, pay our software licenses, mail tax documents, submit expense reports, cancel expense reports, run to the Apple store for supplies, order food for the tired and hungry and, in between it all, try to grab that first cup of coffee.

4.  What would you tell someone who’s considering working at PatientsLikeMe?

We do important work and require 110% every day. You must be on the ball and able to take little direction and run with it – in other words, if you need someone to dictate your every move, this is not the place for you. We work very hard and at times play very hard, but most importantly, we do it together.

Everyone here is on the same team and, believe it or not, there are no cliques.  People genuinely care about each other. I chalk this up to Team Heywood. Lastly, we have a fairly rigorous interview process, but if you make it through and join the company, you will never look back.

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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 Research Scientist, Senior User Experience Designer, Marketing Associate and more at the moment.


Recognizing Multiple System Atrophy (MSA) Awareness Month

Posted March 20th, 2012 by

In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US).  Today we’d like to spotlight one of these lesser-known conditions:  multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and approximately 50,000 Americans.

A Snapshot of the MSA Community at PatientsLikeMe

There are no celebrities with MSA, nor is there a high-profile nonprofit organization driving awareness of the disease.  Instead, MSA patients have organized themselves through a “Miracles for MSA” Facebook page and determined grassroots efforts.  They’ve also designated March as Multiple System Atrophy Awareness Month.  Their goal?  “We want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.  Together, we can make miracles happen for MSA.”

What can you do to help?  Learn about MSA and help spread the word.  Previously known as Shy-Drager Syndrome, MSA affects middle-aged men and women and advances rapidly with a progressive loss of motor skills.  It is very rare for someone to live 15 years with MSA.  One of the common symptoms is stiffness, similar to what’s seen in Parkinson’s disease.  As a result, MSA is considered a “Parkinson’s plus syndrome,” but it does not typically respond to Parkinson’s treatments.

See MSA’s devastating symptoms firsthand – including losing the ability to speak and swallow solid foods – in this moving YouTube video made by the daughter of a MSA patient.  It’s been entered in the 2012 Neuro Film Festival from the American Academy of Neurology, with winners to be announced April 22, 2012.


Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part II)

Posted March 16th, 2012 by

Dr. Dee Kite ("Coach Dee"), a PatientsLikeMe Member and Author of "The Dumbest Things Smart People Say to Folks with MS"

In Part I of our interview, we learned how Dee came to write The Dumbest Things Smart People Say to Folks with MS, how PatientsLikeMe’s MS Community was a critical part of her research and, most importantly, her “top three dumbest things” not to say.

Today we find out more about Dee’s personal journey with multiple sclerosis (MS) as well as what it’s like to be a life coach to MS patients.  Don’t miss this insightful interview with an MS patient who has focused her life around other MS patients.

You’re a life coach with a specialty in MS patients.  Tell us what kind of obstacles you see your MS clients facing – and ultimately overcoming.

I’ve always found it comforting, as do my clients, to know that we face similar obstacles. Since there are a lot of similarities I’ve developed a three-stage program to give us the structure we need to overcome the obstacles and live our best lives with MS: Regroup, Realign and Reinvent.

First, we’ve got to regroup. Consider Laurie. After her diagnosis there was so much happening: her grief, her family’s grief, recovering from optic neuritis and the steroids, learning how to give herself injections, deciding who she should and shouldn’t inform about her illness, trying different medications for different symptoms, dealing with the Dumb Things people said to her.

For Laurie, for most of us, this was a traumatic, overwhelming time. We dedicated an entire coaching session to regrouping. In other words, understanding every new obstacle in her life and creating a plan to take care of it. It wasn’t easy, but I’d been through it too, so Laurie knew she could depend on me to see her through. For my clients it’s a kind of “getting your feet back on the ground” stage, where I teach them how to move out of “overwhelm” to a sense of control. It’s a skill they can use for the rest of their lives.

In the first stage we’ve made a conscious effort to understand what living with MS means for us. In the second stage we realign to our new reality. The sooner, the better. When your car starts pulling or drifting away from a straight line, you know it’s out of alignment. When we begin learning to living with MS, we’re out of alignment. Without realizing it our minds drift to the dreams and the expectations we’ve always had. We’ve got to realign the way we look at the world, to let go of all our dreams and expectations in order to clear a space for stage three.

For Dave this was particularly challenging. Like Dave, often my client’s “story” has blocked his or her ability to realign. When Dave and I began coaching he focused on how this was “not where I’m supposed to be at 40 years old.” He focused on all the terrible things his ex-wife had done to him since the diagnosis, on all his mistakes, on everything that had already happened. He needed to realign. Simply put: don’t look back. I guide my clients to make a seismic shift by taking power away from their past.

When my clients have regrouped, they understand their disease and what needs to be done. When they realign, they let go of the past. In the process of realigning they learn that the quicker they let go of yesterday, the faster they can reinvent their new lives with MS…and the faster I help them create their new dreams and plans for a great life. This is much more an opportunity than an obstacle. And there is one tool my clients either love or hate but either way they’re always amazed at how well it works. They start living by this rule: “Don’t complain.  Ask for what you want.”

What’s the most important lesson you’ve learned in your own MS journey?

Dr. Dee Kite ("Coach Dee") with Her Dogs, Trixie and Coconina

That I had to change my definition of success. Before I was diagnosed, I had a rather cookie-cutter definition of success, with my plans lined up like a stack of dominoes. I’d get married, have kids, live in my dream house and be a strong, independent woman. I’d be a great wife, mother and professor. I’d entertain, have lots of friends, stay in great shape, play tennis. I had so many dominoes lined up that I could have tiled the kitchen floor.

And in slow motion, each domino crashed into the next. I’d get so tired that if I were starving and a plate of food was across the room I wouldn’t be able to get it. No energy meant no children, no travel, no job and no dinner parties. My herb garden shriveled. No more tennis because after a MS exacerbation I couldn’t see the ball. Stay in shape? I was so depressed I ate myself into stretch pants and [my husband] Scott’s t-shirts. Not such a great wife, family member, or any other role I’d envisioned. For a long time I just tried to stay sane and protect my energy level. It was not pretty.

I had to let go of my dreams and redefine success. Now it isn’t about the destination, it’s about the journey. I have had to become more like a pilot. While the flight plan is essential, the pilot has to continually monitor the weather, wind direction, wind speed, and make corrections along the way. Eighty percent of the time it’s about gauging the situation and making corrections. Success for someone like me who is living with MS, an unpredictable and debilitating disease, involves a lot of corrections to bring myself back on course. It’s been one heck of a flight to get here.


Interview with Dr. Dee Kite, Author of “The Dumbest Things Smart People Say to Folks with MS” (Part I)

Posted March 15th, 2012 by

Dr. Dee Kite ("Coach Dee"), a PatientsLikeMe Member and Author of "The Dumbest Things Smart People Say to Folks with MS"

Continuing our observance of MS Awareness Week, we’d like to introduce you to longtime PatientsLikeMe member Dr. Dee Kite (“CoachDee”), who has been living with multiple sclerosis (MS) for over 23 years.

A life coach who specializes in MS patients, Dee became interested in social awareness, or how best to talk and interact with a patient with MS.  What kinds of comments are insensitive, for example?  And what is that MS patients would love to hear instead?  Find out about that and more in our two-part interview with the author of The Dumbest Things Smart People Say to Folks with MS.

What led you to write the book – and how did PatientsLikeMe play a role?

When I was diagnosed with MS in 1995, I lived with a feeling of panic and struggled just to survive. I remember the first advice I received. Trudy, a woman brimming with confidence and good cheer, told me, “You may not be able to do much about MS, but you can have a positive attitude.”

I felt so ashamed because no matter how hard I tried, my attitude was NOT positive. Physically I was pretty much okay, because being blind in one eye and feeling like I had the flu every afternoon were not going to kill me. Emotionally I was not okay. I didn’t know what would happen next, and I was scared. I’d sneak out of the bedroom at night so my brand new husband, Scott, wouldn’t hear me cry.

Looking back over the 17 years I’ve had to tell others I have MS, I realize they too probably felt sadness and fear. But instead of openly admitting this, most preferred to tell me what I should do to cure my disease or alleviate symptoms. Katy said I should ride horses because “Shelia” had been cured when she rode.  Another person urged me to rush out and be stung by bees.  A sure cure!

I continued to receive prescriptions for off-the-grid MS “cures” when what I really wanted was just simple conversation. I wondered what others living with MS were hearing. I thought if they were having similar experiences it might be a helpful topic to write about on my website, MyMSCoach.com. So I posted this question in the PatientsLikeMe MS forum:  “I’m trying to collect the worst things people have said to us so I can help educate them about what we really need to hear.  Has anyone said something to you that didn’t help or even made you feel worse?”

The Dumbest Things Smart People Say to Folks with MS, a Book That Was Conceived at PatientsLikeMe

The floodgates opened, and PatientsLikeMe members responded (and continue to respond years later!). The thread generated such passionate responses I was amazed. Some things people had heard were so shocking I gasped. Others were so sad, I cried.

While I had just been thinking of an interesting topic for an article, the patients who were sick and tired of thoughtless comments saw an opportunity to be heard. One woman said, “You need to write a book about this!” Another patient said, “Yeah! 1,001 Things Not to Say to Us!” So it all began right here on PatientsLikeMe.

If you had to choose, what are the top three dumbest things you could say to someone with MS?

It’s hard to choose three, because there are so many dumb things! Here are three “classics” because most of us have heard them:

  • You don’t look sick,
  • _______ (insert name) died from MS
  • _______ (insert person) has MS and is doing so much better than you.

Here’s another great example of a dumb thing.  Brenda parked in a handicapped space. A mother and her kids ran up to her shouting, “That is the most inconsiderate thing you can do! I have a handicapped husband!” Brenda turned and said, “I have MS.”  The woman practically growled. “There’s nothing wrong with you.”

Brenda just got back into her car and drove home. She didn’t know what to do. And she wondered, what does handicapped look like? With MS there is no way to know.  It can be so demoralizing to always be in pain and then to be continuously wounded emotionally by other people’s perceptions and projections. That’s what The Dumbest Things Smart People Say to Folks with MS is all about, how the lack of awareness can deeply hurt us. And a lot of times it’s somebody we love.

Read Part II of our interview with Dee.


MS Awareness Week: Real-World Descriptions (and a Poem!) from Our MS Community

Posted March 12th, 2012 by

We kicked off MS Awareness Month by sharing some key facts we’ve learned from our MS community (26,000+ members and counting).  Now, we are digging a bit deeper in honor of MS Awareness Week.  You’ve already heard about common MS symptoms as well as frequent topics in our MS forum.  But what it is really like to live with MS – and how does MS impact not just those diagnosed with the disease, but all of us?

The National Multiple Sclerosis Society (NMSS) has put together a video showing all of the ways MS impacts individuals, families and society.  For example, did you know that MS costs the US economy $28 billion each year?   Or the average MS patient $69,000 per year?  Another startling fact is that the average person with MS leaves the workforce 10 years after diagnosis.  (Most are diagnosed in their 20s and 30s).  Check out the video above to discover more about how MS impacts you, even if you don’t know anyone with the condition.

As for an accurate picture of life with MS, the best descriptions come from those who know best – MS patients.  In a recent discussion in our MS forum, patients asked each other what one word they think best sums up life with this chronic, often disabling disease of the central nervous system.  What were their responses?  Here is a word cloud illustrating 30+ answers submitted by our community.

A Word Cloud of Members' Answers to "Describe MS in One Word"

Putting words together in a full portrait, below is a poem by friendinflare, a three-star MS member who has lived with MS for 10 years.  Not only does she depict some of the issues MS patients face, but she also speaks to the relief that comes from sharing your experiences with others like you.  (At PatientsLikeMe, you can share treatment and symptom data, status updates, private messages, forum discussions and much more.)

In early November, I discovered a website.
A place where MS’rs can talk about our plight.
Our symptoms are as varied as our usernames.
There are threads for information, advice and even games.
We have legs of jello, vision that’s blurred,
And limbs that tremble from damaged nerves.
We still remain hopeful – but no one’s been cured.
“Daily injections will help” our doctors have reassured.
Our fatigue gets so bad we are glued to our beds,
We have cognitive issues from lesions in our heads.
Most don’t understand us, we’re a breed of our own.
We talk everyday without picking up a phone.
Our computers are a lifeline to hope,
Letting us talk with MS’rs from all over the globe.
Even though fights can break out at lightning speed,
Members always support those in need.
Here’s to everyone at PatientsLikeMe.

Getting a clearer picture of MS?  Good – but there’s even more to come.  Stay tuned for our two-part interview with an MS patient who authored a book called “The Dumbest Things Smart People Say to Folks with MS.”


Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy

Posted March 9th, 2012 by

ALS Activist and Petition Co-Author Tom Murphy

You may remember our interview with ALS advocate Debra Quinn from last fall.  Today, we’d like to introduce you to another ALS patient activist in our midst:  Tom Murphy, a PatientsLikeMe member since January 2011.  As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have launched a petition on Change.org that’s gaining steam.  Their goal?  20,000 signatures.

Addressed to “corporate citizens, FDA executives and neurologists,” the petition asks that “compassionate use” drugs be made available to ALS patients now.  What this means is that Tom and the Treat Us Now group want promising Phase II drugs showing safety and efficacy to be made available to ALS patients prior to FDA approval.  The reason is simple. ALS patients, who face an average life expectancy of two to five years following diagnosis, don’t have time to wait.

Check out our interview with Tom to learn how he became part of ALS Treat Us Now and what two experimental drugs his group is focused on in particular.

1.  How did you get involved in the “Treat Us Now” movement?

ALS Treat Us Now Is a Nonprofit Organization Dedicated to Accelerating Access to ALS Treatments

The ALS community seems to be a very close-knit group of people who readily share information and collaborate openly.  This is often related to the objectives of spreading ALS awareness, accelerating new treatments for people with ALS, and most importantly, doing whatever we can to assist in the identification and development of a cure for this rare and terminal disease that has been with us for way too long without an effective treatment or hope for a cure.

Since being diagnosed with ALS in December 2010, I (and many others like myself) have developed a very extensive “network” within this community utilizing blogs, email, Facebook, Tumblr, Twitter, LinkedIn, PatientsLikeMe, ALS Therapy Development Institute (ALS TDI), the Muscular Dystrophy Association (MDA) and the ALS Association (ALSA) and other ALS-related internet sites.

This network included Ms. Sherron Greene from Kaplan, LA (whose brother Kendall was officially diagnosed in October 2010), who was working with the Treat Us Now group and reached out for my assistance with some research and ALS points of contact at various medical facilities involved in ALS clinical trials. I wanted to be part of this Treat Us Now team and the rest is history.

2.  What kind of response have you received to the petition so far?

As of 12:00 p.m. EST today, we’ve gotten 10,520 petition signatures.  I’d ask folks to please take the time to watch the complete video below about my friend Kendall Saltzman, and you will begin to understand much better the urgency of our fight regarding compassionate use drugs for people with ALS.

3.  Tell us about the two drugs – dexpramipexole and NP001 – mentioned in the petition.

Highly related to the Parkinson’s disease drug pramipexole (Mirapex), the neuro-protectant dexpramipexole (Empower) may slow ALS progression by keeping the power on in deteriorating motor nerves. Dexpramipexole is thought to maintain mitochondrial function in people with ALS by detoxifying reactive oxygen and nitrogen species.

In the Phase II study, ALS progressed 31% slower in patients taking 300mg of dexpramipexole daily compared to placebo.  It also appeared to be safe and well-tolerated.  The drug, now licensed to Biogen, is currently being tested at the Phase III stage in about 800 patients at 81 sites worldwide.  ALS TDI calls it “extremely promising.”

US and Canadian Locations for the Dexpramipexole Phase III Clinical Trial

In May 2011, I was one of the first 10 ALS patients to be enrolled in the Phase III trial at the University of Virginia.  The FDA fast-tracked dexpramipexole in 2009 due to the need for a more effective treatment for ALS.  Initial Phase III results are expected in 2013.  (Learn more about dexpramipexole here.)

The experimental drug NP001, administered by intravenous injection, is still in the Phase II clinical trial stage.  NP001 may lower the levels of activated cytotoxic macrophages in people with ALS, thus reducing inflammation and further injury to the motor nerves.  The Phase II double-blind, randomized, placebo-controlled trial is ongoing at several US locations.  Unless an early usage allowance is granted, it may require an additional 5-7 years of testing.

Led by top ALS researcher Dr. Robert G. Miller of Forbes Norris MDA/ALS Research Center in San Francisco, this trial is notable as the scientific foundation of NP001 is extremely sound.  Andrew Gengos, CEO of Neuraltus, the manufacturer of NP001, says, “Our hope is that if we can reduce or eliminate the neuroinflammation, it will have a beneficial effect on the underlying progression of ALS.”  (Learn more about NP001 here.)

4.  Beyond signing the petition, what else can people do to become ALS activists?

Take part in the activities and initiatives of the ALS Association (ALSA), the Muscular Dystrophy Association (MDA), the ALS Therapy Development Institute (ALS TDI, founded by PatientsLikeMe’s Jamie Heywood) and Treat Us Now.

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What does PatientsLikeMe think about compassionate use?  “Our society needs to rethink the balance of risk and reward to allow patients the right to pursue the treatments they believe can help them,” says Co-Founder and Chairman Jamie Heywood, whose brother Stephen died from ALS. “This is a complex problem with many balancing issues, but I believe that there needs to be a mechanism for those that consent and who understand the risks to pursue options they chose regardless of regulatory status. Those facing illness should not be denied the right to self-determine their own path to life, liberty and the pursuit of happiness.”


It’s World Kidney Day. How Are Your Kidneys?

Posted March 8th, 2012 by

Today Is the Seventh Annual Observance of World Kidney Day

Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF).

Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health.  For example, did you know that it’s our kidneys’ job to remove toxins and excess water from the body?  Or that these two organs – roughly the size of a fist each – help regulate our blood pressure, blood cell production and bone health?

It’s no wonder then that humans can’t survive without kidneys, which brings us to this year’s World Kidney Day theme:  the need for life-saving organ donations and kidney transplants.  Without them, those with chronic kidney disease who progress to complete kidney failure (aka end stage renal disease) have a bleak prognosis.  Unfortunately, the need for transplantation is growing worldwide due to the increasing prevalence of diabetes and high blood pressure, the main causes of kidney disease.

A Kidney Transplant Saves Lives for Those with End Stage Renal Disease

As a result, prevention is inextricably linked to being healthy in general:  maintaining a healthy weight, exercising and eating right.  Here in the US – where approximately 26 million Americans have chronic kidney disease, and millions more are at risk – the National Kidney Foundation has launched a campaign featuring legendary restaurateur B. Smith.  Check out the video below to learn about the risk factors for kidney disease and how you can reduce them with simple actions such as reducing salt and fat intake, quitting smoking and replacing soda with water.

Are you living with high blood pressure, diabetes or chronic kidney disease?  Connect with others like you to share experiences, support and advice.  At PatientsLikeMe, we have 2,700+ patients with hypertension, 2,700+ patients with type 2 diabetes and 300+ patients with chronic kidney disease.  In addition, 1,900+ members have undergone – or are awaiting – a kidney transplant, while 50+ others are on hemodialysis or peritoneal dialysis.  Add your own story and gain insight from this wealth of real-world knowledge.


Spotlighted Blogger: Interview with Lissa of “Psoriasis Girl’s Point of View”

Posted March 6th, 2012 by

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What A Psoriasis Outbreak Looks Like for Lissa

Welcome to the sixth installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesis, type I diabetes, bipolar I disorder, Parkinson’s disease and ALS, and today we introduce Lissa, a PatientsLikeMe member who has lived with psoriasis for over a decade.  An early participant in our psoriasis forum room, Lissa appreciates the support of family and friends but has discovered an element of kinship through meeting other psoriasis patients.

Entitled Psoriasis Girl’s Point of View, Lissa’s new blog chronicles the ups and downs of recurring psoriasis outbreaks (which cover most of her body with itchy red plaques), working with a dermatologist and experimenting with different treatments and skin care regimens. Most recently, she explored UVB photo therapy and candidly showed the before and after photos of the initial results.  If you’re wondering how she finds perspective amidst these lifelong challenges, read on for inspiration.

1.  I see you first experienced psoriasis as a teenager.  How have things changed since you were first diagnosed?

You know how teens can be!  It was tough handling the criticism young people subject themselves and each other to.

My psoriasis became more of a permanent fixture on my body in my early-to-mid twenties, instead of coming and going as it usually did in my teens.  I suppose as the stress of being ‘part of the real world’ increased, so did my psoriasis outbreaks: working full-time in retail management and balancing going to school part-time, martial arts classes, and a relationship.  I eventually resigned from work in late 2010 to go back to college full-time and be a homemaker, with stress being an influential factor.  My stress level is fairly low these days, however the psoriasis remains uncontrollable.

A Photo of Lissa's Legs During an Psoriasis Outbreak

My thinking about psoriasis has certainly changed.  When I was a teen, I didn’t really put any thought into the fact that this is something I will deal with my entire life.  I guess I just assumed it would be minor and come and go, not knowing that I would one day be 85% covered, with it affecting so many aspects of my life, including trying to treat psoriasis while trying to conceive!  It’s a struggle but I know I need to stay positive.

2.  Your blog conveys a great attitude. What is the most stressful aspect of having psoriasis, and what helps you to cope?

In my blog, I’m just being real, just being myself: someone who is learning to be positive.  I truly believe the mind is powerful, and while I wish I could just think my psoriasis away, I know that staying positive helps.

There are many frustrations to having psoriasis, and I’m sure they vary from person to person.  I get stressed about money and affording prescriptions and treatments, stressed about public interaction when it’s hard to hide my plaques.  But one thing that really gets me feeling like I’m spinning down a dark hole is when a medication or treatment seems to be working and it looks like I will finally get all the psoriasis to go away and then new plaques begin to crop up and quickly spread like wildfire.

I cope by talking to my husband and getting back rubs, trying to stay positive and keeping my mind focused on something else, like reading or cooking.  I also think it’s important to exercise to fight stress.  As far as providing comfort to psoriasis, a good lotion that’s geared towards itch-relief, is fragrance-free, and thick and creamy is the weapon of choice to slather on deliberately as often as necessary between topical Rx applications.  Other than that, gotta let “the attitude determine the altitude.”

3.  Great to see you updating your profile often. Which profile tools do you find most helpful, and why?

I like the charts.  I like having the ability to track my symptoms, my mood, my quality of life, and so forth to look for patterns and connections.  I find them all to be in-depth, and they ask good questions. I tried keeping a journal in the past to track my psoriasis, but this is better because it’s easier to read, all on one page, color-coded, and more detailed.  I also like the InstantMe tool.  It’s like a status update.

The InstantMe Survey at PatientsLikeMe That Lissa Uses

The community aspect is great.  Between the forums, personal messages, following people, commenting on other patients’ InstantMe [answers], and updating your own info, there’s a lot to do on the site. When I first signed up, I wasn’t expecting all the useful tools – I just thought it was a community.

4.  What have you learned from fellow PatientsLikeMe members? Anything that has surprised or inspired you?

I’ve learned that there are other people that have their good days and bad days, just like I do.  They worry about similar things that I do, so we can bounce things off one another, seek advice and solace in one another.  We’ve talked about treatments and medicines, lotions, make-up, and fashion, and how we relate these things to dealing with psoriasis.  I’ve been inspired by other patients to try to feel better, and to try to make others feel better too, help them stay positive.

It’s nice to know there’s a community of real people who truly understand how I feel.  My husband and friends and family are empathetic and there for me, but the other patients are people who really know what it’s like to feel the way I’ve felt.  I really feel like I can talk about anything to some of the friends I’ve made through PatientsLikeMe.

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PatientsLikeMe member ewilley


What Do You Know About Multiple Sclerosis?

Posted March 1st, 2012 by

The Multiple Sclerosis Foundation Has Been Sponsoring MS Education and Awareness Month Since 2003

March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves.

This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the best quality of life possible.  This means different things to different people as MS varies widely in severity, with approximately 15% of those diagnosed becoming severely disabled.  It could include adhering to a treatment regimen, eating healthy, keeping fit, developing a support network and/or maintaining good emotional health.

It could also refer to nurturing hobbies and interests.  That’s why the MSF has launched the “Show Us Your Best” contest, which calls for creative submissions (such as poems, essays, photo collages, videos, songs and more) demonstrating how people are raising awareness of MS.  The deadline for entry is March 31st, and the grand prize winner will win a cruise for two on MSF’s 2013 “Cruise for a Cause” to Alaska.

A Snapshot of the MS Community at PatientsLikeMe - and Its Age/Gender Breakdowns

With 26,000+ members, the MS community at PatientsLikeMe is one of our largest.  Approximately 80% of the MS community is female (reflecting the fact that MS is at least 2-3 times more common in women than men), and slightly more than half have the relapsing-remitting form of the disease (RRMS).  We also have 1,400+ patients with primary progressive MS (PPMS), 2,200+ with secondary progressive MS (SPMS) and 580+ with progressive relapsing MS (PRMS).

Some of the most commonly reported MS symptoms in our community include bladder problems, brain fog, excessive daytime sleepiness and stiffness/spasticity.  What are our members taking for these issues – as well as for MS itself?  From disease-modifying treatments (DMTs) like Copaxone, Avonex and Tysabri to steroids like Prednisone to symptom-specific medications like Baclofen and Modafinil, our members have submitted hundreds of evaluations for nearly all available treatment options.  (Click on each drug name above to find out how they rate the effectiveness, side effects, cost and more.)

A Snapshot of Some of the Most Commonly Reported MS Symptoms - and Their Severity - at PatientsLikeMe

Our members are not only sharing their experiences with treatments and symptoms on their PatientsLikeMe profiles – they’re also chatting about them.  A lot.  To date, the MS forum room has over 786,000 posts! Some of the most frequently used forum tags are CCSVI (“The Liberation Procedure”), Low Dose Naltexone (LDN), SSDI (Disability Insurance), Fatigue, “LimboLand” and Research.  (Click on each category to see what patients are saying about the topic.)

Piqued by all the knowledge found in our MS community?  This is just the the tip of the iceberg – and the kickoff of our MS coverage this month.  Stay tuned for more about what our MS members are sharing and learning during MS Awareness Week (March 10-17th), organized by the National Multiple Sclerosis Society (NMSS).