Food for thought: August edition

Posted August 28th, 2014 by

Are you trying to lose weight in time for the fall? Or are you hoping to gain a few pounds instead? Weight fluctuation is a part of everyone’s life, and PatientsLikeMe members have been sharing about their weight management in the forum, everything from the Primal Blueprint 21-day diet to alternative substitutes for pasta and carbs. Read what everyone is saying.

“Finished my first week on the diet, I lost 3 lbs and my psoriasis is not as bad, it has cleared up a little…I do miss carbs though.”
-IPF member

“I think I would very much like to increase my fiber intake in the form of soup made of tolerated vegetables. I think soup will be much more easily digested than some other ways of increasing fiber and maybe cause me less problems, I hope.”
-MS member

“I’m Italian, so that’s a major problem with Type II! I can’t go very long without a dish of pasta. Does anyone have a REAL suggestion for a substitute? Or am I going to have to tempt the fates once a month or so and have a dish of pasta? I tried spaghetti squash. It was like eating shoelaces!”
-Diabetes type II member

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And don’t forget to check out our other Food for Thought posts if you missed them.


Results! PatientsLikeMe diabetes members share about challenges and concerns

Posted August 25th, 2014 by

Earlier this year, more than 450 PatientsLikeMe members from the type 1 and type 2 diabetes communities took part in a new survey from our partners at Kaiser Permanente Colorado’s Institute of Health Research. (Thank you all for adding your voices!) Members shared about everything from the day-to-day challenges of living with diabetes to the difficulties of communicating with their doctors.

 

This is real-world, patient reported health data doing good; helping others living with diabetes learn more from people just like them and showing researchers where to focus their efforts in the future. Click here to view the results.

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Seeing [MS]: The invisible symptoms – pain

Posted August 22nd, 2014 by

“I’m burnt alive every day.”

That’s how Stephen Papadopoulos, an Australian living with multiple sclerosis (MS), describes the level of pain he experiences on a daily basis. Pain is the second of nine symptoms portrayed in the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] awareness campaign, and Stephen details his experience in the video below:

 

You are now seeing pain

Photographed by Garth Oriander
Inspired by Stephen Papadopoulos’ invisible symptom

 

We’re highlighting pain this month in an effort to reveal the invisible side of living with MS. You can also read other posts on pain – of particular note, Tam’s story about her private, intense pain.

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“This is a very serious issue” – PatientsLikeMe member Jess shares about her PTSD

Posted August 18th, 2014 by

Talking about past trauma isn’t easy – so we want to say thank you to Jess right off the bat. She’s a PatientsLikeMe member who suffered a TBI, and she recently talked with us about her experiences. Jess walked us through her accident and her diagnosis and went on to explain that even though you may not see visible symptoms, a person can still be suffering on the inside.

Will you tell us about your story and what happened?

On January 11, 2012, when my husband Tim, my daughter Amanda and I left home around 5:45 PM to pick up my friend’s children for church, we had no idea how much our lives would forever be changed. Statistics show most accidents are within 2 miles of your home, but I wonder what statistics are for accidents caused by your neighbor’s teenage daughter.

I was driving and waiting to turn into the development where my friend lives, and as I looked in my rearview mirror, I noticed headlights coming closer and getting brighter. I started yelling to my husband that the car behind us isn’t slowing down. I tried to hit the gas, BANG…I remember seeing the Ford emblem on my steering wheel, then next thing I knew…I was screaming for my daughter and husband. Then my husband jumped out of the car screaming at the other driver. All the while I’m stuck in the car and nobody realized how bad my injuries really were. My husband comes back to our car saying Jessie, it’s our neighbors daughter. My heart sank.

The EMTs called for the “Jaws of Life,” but I apparently wouldn’t have that with our daughter there, so they somehow relieved pressure and got me out.

I was taken to the nearest hospital, where I was diagnosed with a concussion, neck and back injuries and sent home that same evening. Yes, same evening. The doctor instructed me to follow up with my primary within two weeks if I felt no improvements. So here’s where it’s gets interesting: went to primary within in couple days because I wasn’t improving, and I was referred to neurologist and physical therapy.

I met with neurologist, and this would be the first time I would hear the term that would haunt me forever: Post-Concussion Syndrome. I was officially diagnosed, and I feel it’s been a downward spiral since. I started PT shortly after, all the while I had perforated my colon during the collision and was never checked. It leaked for 4 weeks until it finally ruptured and I went into septic shock at home. The surgeon said if my husband wasn’t home my daughter may have come home from school to find me lifeless in the bathtub. So the PT and head injury took a backseat to the rupture. That took many months of recovery, and my husband even put a temporary bedroom in our dining room because I wasn’t able to go upstairs to bed. That was the worse pain I ever experienced in my life.

I know I’m getting a bit winded here but there’s just so much to my story, all because of a 17 year old driving while on a device…

Once I recovered from the rupture, the neurologist and therapists discovered how severe my other injuries truly were/and still are today. I’ve been diagnosed with Post-Concussion Syndrome, PTSD, vision issues, dizziness, short-term memory issues (which my last evaluation showed was severely impaired), and tremors, which we are hoping isn’t Parkinson’s. These are just a short list because I can’t remember all of them at the moment.

How has that changed you and your family’s lives?

This has changed everything! I was supposed to be going to school to be a dentist at this point. It’s sad how somebody else can control your destiny for you and completely mess you up forever. I have God awful mood swings! I’m not the person I used to be, someone who my husband could count on that he could tell me a list of things to get done in a day’s time and I’d remember to do them. He doesn’t like me to cook when I’m home alone because I forget things are cooking and walk away from them on the stove. I’m only 41 years young and trapped in the mind of a 90 year-old sometimes. This injury has put a lot of pressure on my husband to not only provide for us but to worry about me and my health. He knows my health is never going to get better, and there’s always the fear of the long-term issues with head injuries. The unknown. All because of a 17-year kid, I’m sorry to keep saying it, but sometimes I can’t believe it myself.

What are some ways you cope with your conditions?

I cope with my conditions by leaning on my husband, he makes me laugh a lot! I cry a lot. I would like to speak out more about not driving while on a device but I’m working on it. I’ve done therapy but I didn’t feel as though the therapist “got it,” if you know what I mean. I’m learning every day to cope with my condition and so are my family members. It’s harder for them since this is a harder injury to see.

What is a good day for you, what’s a bad day?

I wake up every day hoping is this the day I will be “normal” again? A good day is when I can fully function without snapping or flipping out on my loved ones, when I can actually complete a full grocery shopping trip in one trip, when I have the energy to do laundry and make beds, and when my vision issues don’t act up to the point where I can’t see.

My bad day, I feel I could dig my own grave and lay in it forever, when the ringing in my ears is so terrible (like this very minute) I have to drown it out with white noise just to sleep, when I have to take medication to sleep every night so I get brain rest otherwise, I only get 2 hours of sleep, the worst day is when I’m falling a lot and so dizzy it’s like the drunk spins but without the party.

What do you want others to understand about living with PTSD and TBI?

The one thing I would like people to understand about PTSD is it’s not something to brag about having, it’s not glamorous, this is a very serious issue. I have panic attacks, nightmares and terrible anxiety sometimes so bad I won’t leave my house because I want to avoid getting back into the car again.

I want people to understand about TBI. Think of it this way: go home, turn on every television in your home full-blast, radio same thing, have your kids play around you really loud, and have flashing lights – now get on the phone and try to pay attention. You can’t. That’s what’s it’s like to have a TBI for me. I can’t filter things out, it’s really hard to. Sometimes I just need a quiet break.

To sum it up for both, please don’t judge a book by its cover, it may be masking a bigger issue. I hide my symptoms a lot more often than I should. Just because you can’t see the injuries doesn’t mean I’m not screaming on the inside.

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Putting the spotlight on ALS

Posted August 15th, 2014 by

If you follow PatientsLikeMe on Twitter or Facebook, you might be wondering why our staff decided to dump ice water all over their heads this past week. Well, here’s what’s up: it all about raising awareness for ALS.

It began in 2012, when local Boston College alumnus Pete Frates was diagnosed with amyotrophic lateral sclerosis (ALS) at the young age of 27. ALS is a motor neuron disease that affects the nerves that control voluntary movement. As the condition progresses, patients are eventually unable to walk, talk, eat or communicate on their own.

We’re all too familiar with ALS at PatientsLikeMe – in 1998, Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with the neurological condition, and his journey sparked the journey that became PatientsLikeMe.

Ever since his diagnosis, Pete’s been working to raise awareness about ALS, and when his friend Pat nominated him for the ice bucket challenge, he posted a video encouraging others to “Strike Out ALS.” So in Stephen, Pete and everyone with ALS’s honor, we decided to accept the ice bucket challenge.

 

We also challenged a few of our friends:

Global Genes:

Susannah Fox:

 

Even Stickman made an appearance to help out our friends Jeff Dwyer and Adam Darowski:

 

Of course, it’s not just about pouring water over our heads – it’s about donating to ALS research and educating everyone about what it’s like to live with ALS. The only question is…do you accept the challenge?

Share this post on twitter and help spread the word for ALS awareness. And don’t forget to post your own video of the ice bucket challenge!


“MS doesn’t define anyone” – PatientsLikeMe member Anna shares about her journey with MS

Posted August 13th, 2014 by

We’ve had the pleasure of featuring many PatientsLikeMe members on the blog, but never one with a nickname quite like this. Anna is living with MS and we caught up with her to talk about coping, finding support, her motorized scooter and where the name “Mad Anna” comes from. Read below to see what life with MS means to her along with a poem she wrote not long after being diagnosed. Thanks for sharing, Anna!

Will you tell us a little about yourself?

I’m 56, mad as a brush (but responsible in the necessary ways). Love nature and the great outdoors. Used to walk (had dogs) and cycle loads. I’ve mostly worked with vehicles/transport after a start in office work, which I hated, so I moved on to chauffeuring, bus driving, driving instruction (cars, buses and lorries), agency lorry driving while I ran down my driving school in readiness for…tube train driving. Fate playing its hand in getting me from a self-employed status to employed by a company (London Underground) who doubled my 10-year pension with them and medically retired me when I was too crocked to stay there. That move also enabled me to leave a bad marriage, but that’s another story. I’ve been, happily, with my partner for 10 years now, and we’ve lived together for 6 of those. He’s lovely and supports me without being ‘arm-strokey’ about it, which I’d hate. We’re similar in temperament and just adapt when necessary and get on with it. Oh, and we laugh lots!

What was your journey like to diagnosis? How has your life changed since MS?

Aaah, the ‘six million dollar’ question. Since I was in my early teens, or maybe even a bit before, I’ve had unexplained illnesses. I thought hormones played a part as I was usually worse during PMT. I started periods when I was 11 and the PMT really kicked in about a year later so it ties in. I was always ill after a big life event: house move, job move, parachute jump, etc., but as doctors’ tests were negative, I got fed up with being told “The tests are negative so you must be ok…”…….what??! So I went to the doctors because I was “ok”…I think not!

Finally, after an MRI showing lesions in my brain, I was diagnosed at the age of 52, 3.5 years ago. My doctor phoned me one Staurday and told me he thinks it’s MS, but the neurologist would confirm it the following week. I can only think he phoned me because he was shocked (I ended up comforting HIM because I felt bad for him having to tell me). Afterwards, I was left with thinking about it, alone, because my partner Bob was out for the day and it was the weekend, so there was no professional I could talk to. I just tried to put it out of my consciousness and let it sink in naturally. Poor Bob was more shocked than me, I think, and a friend who’s an ex-nurse hit the roof that he’d told me like that and pointed out that the news could have tipped me over the edge to take my own life or something. I’ve since heard that suicide is quite high amongst MS sufferers. I can understand that, on a bad day futility seeps into my mind…BUT…my spirit kicks in and bollocks me (she’s a stroppy mare!) and I’m back. I always say that if that side of me ceased to exist, then it probably would all be over. One of the tablets that the GP prescribed made me say to Bob “Death seems like a good option”…we said in unison that I’d be coming off those tablets then! I take as little allopathic drugs as possible, preferring vitamins, natural progesterone and cannabis tincture (great for pain and spasms)…it’s a shame that all that National Insurance can’t be put towards it. Pharmaceutical companies have it all sewn up, don’t they? Quick kick my soapbox away before I get started!

Sorry that was an immensely long paragraph! The other questions about how it’s changed my life is more straightforward, you’ll be please to know, haha. I was medically retired (they call it medical termination…ooer) from work as I could no longer walk without the need of crutches and as I was a tube train driver, for some reason (oh, that’ll be 640 volts!), they wouldn’t allow metal crutches down on the track. Oops. I was getting far too tired to commute and work a full day anyway. Bob & I worked together and sometimes I’d just sleep all the way in and all the way home, I was so knackered. Fatigue and mobility are the main two ways it’s changed my life. More about that below…

Who are Pegasus and Mad Anna?

Pegasus is my beloved Tramper (off-road mobility scooter). I first saw one on Top Gear, a 3-wheeler, and was impressed. I was still working, not yet diagnosed and not realizing that my mobility would get this bad, so it went forgotten until a year or so later. When mobility had become bad and the MS symptoms were invading my time, psyche and body, I became a bit withdrawn and stopped going out much. I couldn’t walk without pain or crutches and it was all an effort. I don’t know what prompted us to talk about Trampers but I then phoned the company to inquire about second-hand ones (they’re not cheap!) and the rep advised me to try one at a nearby country park that lent them out for free. We went…I “tramped,” I chatted with dogs…and their owners…I twanged branches as I sped through the woods, I laughed…I LAUGHED…and when Bob asked me if I liked it…I cried. Damn, I’m doing that now too, it was very emotional because it was so good. I felt like I’d got some of my life back. I’d loved walking, horse-riding and cycling in the past, had dogs and lived in the country, and missed it all so much. Now? I have been known to ‘click’ Pegasus like a horse (with no audience thank goodness). I am friends with many horses, donkeys, dogs, guinea fowl (on a farm nearby), oh and people, now and the words I have on the back of my seat say it all “I like the free fresh wind in my hair, life without care, I’m broke, it’s ok…” taken from one of my favorite songs, “The lady is a tramp.”

Mad Anna? Oh, I’m me. That’s it really unless you want me to write pages! Hahaha. See above in the ‘about me’ section, that’s me. I don’t do ‘pretence’ or falseness. I’ve never really but have got more ‘me’ as I’ve gotten older. When I turned 40 I said I’d never ‘suffer fools’ again. I was wrong, another long story, but when I turned 50 I said I really wouldn’t suffer foold…which means that when I turn 60, 70, 80 (and more???) I’ll probably be a right stroppy old mare! Haha!

What’s a good day like, and what’s a bad day?

Hmmm, a good day will see me up, showered and dressed before 10 and not so knackered that I can’t function for an hour. I will then go on to do something, go to the shops, the MS centre, or a Tramp. Have a short nap/rest/stretch then spend the evening with Bob, or alone (he works shifts) watching a film or similar. A Bad day will be what I call a ‘bed day’ because that’s where it will be spent. Shower? Dreass? You’re having a laugh.

Most days, however, are somewhere between those. Whole days are never the same all day. I liken having MS to riding a roller coaster like a rodeo rider would ride a horse. One arm flailing about as the horse bucks…YEEEHAAA! Sometimes, though, I feel like hiding inside the car while the roller coaster relentlessly keeps going. All things are done with rests in between, e.g. Get up late, 10-12ish, shower (if I can manage one), rest, dress, rest, breakfast, rest, potter a bit, rest, lunch, longer rest, Tramp (on a good day), rest, TV/write/read/chat, bed for the night. If I were to plot it on a graph it’d look like a mountain range or a big wiggly line!

How does PatientsLikeMe help you manage your MS?

I’d wanted to keep a health diary for ages but never got around to it, so PatientsLikeMe offered me the opportunity to do just that. Once I’d joined, I found some of the forums interesting and have had some nice chats. We’re all different, of course, but it’s interesting on many levels. MS doesn’t define anyone, or at least shouldn’t. I’m first and foremost me. I happen to have MS, which is kind of all consuming in many ways, but my character is bigger and stronger than MS and will not be changed by this b*ll*cks. :-D Please excuse the language, I’ve always found a good swear is a good way of releasing angst and getting me through adverse times, so it gest used lots nowadays. It’s my way. For angst I also have a punchball…and some lovely bright pink/fuchsia boxing gloves. Having fun in life is a necessity when at all possible.

I don’t know if this is of interest, but I wrote this poem not long after diagnosis:

Letters after my name
When you’ve got letters after your name that’s sometimes all people see
Some wear them like badges to define themselves. But that’s not for me
This is who I am. My big heart, my smile, my love
Not some label, description of an outside thing, given from above
For forms I’m asked is it Mrs, Miss, Ms? I have to say the latter
But I’d rather you use my first name as the label doesn’t matter
Twice married, twice divorced what title would you give?
Apart from ‘fussy’ I’d prefer a description of the way I live
I love the great outdoors, wildlife, photography, swimming, dogs
For me my life isn’t something contrived or written for others in blogs
I grab it by the short n’ curlies, give a shake and see what falls
Life’s expansive, fun, a challenge, whatever. It’s not contained within 4 walls
That’s why I refuse to weat the label endowed upon me by others
Or live my life as part of a club, a ‘merry band of brothers’
Although my title would be balanced by those suffix letters that is
I refuse to live under an invisible cloud of gloom that is MS.”

That’s all folks!

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Research, support and hope for spinal muscular atrophy

Posted August 11th, 2014 by

If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological disorders are sharing their stories and donating health data to help improve the lives of others and contribute to medical research. And in the spirit of Stephen and everyone living with these conditions, we’re recognizing Spinal Muscular Atrophy Awareness Month this August.

Spinal muscular atrophy (SMA) affects the nerves responsible for movement, including breathing and other bodily functions. It is inherited through genes passed on by parents who are carriers of the genetic code.

SMA affects people of all ages, genders and backgrounds. There are four types of SMA – Types 1, 2 and 3 all affect children and adolescents, while type 4 is usually limited to those above the age of 35. And although SMA is classified as a rare condition, think about this: SMA affects approximately 1 in every 6,000 babies, and about 1 in 50 people are carriers for the condition.1

So what can you do this August to raise awareness for SMA? Orange and purple are the two colors designated for SMA awareness, so wear or display them and let people know why you are! The Families of SMA (FSMA) also organizes many awareness events around the world, everything from walks to dinners to Bowl-A-Thons. Check out their website and find an event near you.

Share this post on twitter and help spread the word for Spinal Muscular Atrophy Awareness Month.


1 http://www.fsma.org/FSMACommunity/understandingsma/quickfacts/


More than skin deep

Posted August 10th, 2014 by

 

August might mean the summer’s almost over, but the effort to raise awareness for psoriasis is going strong. It’s Psoriasis Awareness Month, sponsored by the National Psoriasis Foundation (NPF), and everyone is working to eliminate stigma and dispel the myths surrounding the skin condition.

 

 

Starting with the basics

Q: What is Psoriasis?
A: Psoriasis is a chronic, genetic autoimmune condition that causes red, scaly patches on the skin that itch, crack and bleed.1

Q: Who is living with psoriasis?
A: Over 7 million Americans (equally men and women), and global estimates say 2-3% of the world’s population – as many as 125 million people – has the condition.

Dispelling the myths 

Q: Can I catch it from someone else?
A: It’s NOT contagious! Psoriasis is triggered by a combination of genes inherited from parents and exposure to outside factors such as stress, smoking or infections.2

Q: Is there a cure?
A: There is currently no cure, but individualized treatment options are available that reduce inflammation and skin damage.2

Q: Is all psoriasis the same?
A: Nope, there are many different forms of psoriasis, which you can learn about by visiting the NPF’s description page.

But these questions just start the conversation about psoriasis, and getting involved is a great way to educate others. Unsure where to begin? The NPF has some great activities, including national Walks to Cure Psoriasis and “More Than Skin Deep” informational events. And if you have psoriasis, you can apply for the NPF’s One-on-One program, where people living with the condition mentor those who’ve been newly diagnosed.

Don’t forget to visit the psoriasis community at PatientsLikeMe, too. You’ll see how other members treat their psoriasis, and you’ll be connecting and learning from the people who know what’s its like.

Share this post on twitter and help spread the word for Psoriasis Awareness Month.


1 http://www.biotech-now.org/health/2012/08/august-is-psoriasis-awareness-month-psoriasis-isnt-contagious-but-awareness-is

2 http://www.niams.nih.gov/Health_Info/Psoriasis/psoriasis_ff.asp


PatientsLikeMe (mid-year) news report

Posted August 8th, 2014 by

 

We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights:

In the news

Innovators in Health Data Series: No Data About Us Without Us
(Health Data Consortium)

10 Lessons From Empowered Patients
(US News)

PatientsLikeMe Offers Three Services for Pharma and Researchers
(Applied Clinical Trials)

Speaking the Patient’s Language
(Hospitals & Health Networks)

Straight talk with…Jamie Heywood
(nature.com)

Social Media Site Connects Patients Suffering From Similar Illnesses
(KPBS)

A listening cure: PatientsLikeMe gives patients voice in clinical trial design
(TED Fellows)

For more PatientsLikeMe media coverage, visit our Newsroom.


PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)

Posted August 5th, 2014 by

Patients To Share Their Experiences, Help Researchers Better Characterize Disease
And Develop Treatment Strategies 

CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an online hub for developing and sharing new health measures that better reflect patients’ experiences living with and managing disease.

Actelion is the first pharmaceutical company to use ORE to create a measure for a rare condition and, once completed, to share it with other researchers. Actelion’s Senior Director – Medical Head of VALCHLOR and ZAVESCA Mitchell Nagao said he believes this open approach to research will enhance the existing evidence about MF-CTCL. “As changes in technology, culture, and treatment affect how patients live with disease, we want measurement to evolve accordingly. Our work with PatientsLikeMe will help ensure we’re applying the best principles for patient-centered research and giving tools back to the community so they can evolve them even more.”

PatientsLikeMe Vice President of Innovation Paul Wicks said the project further reinforces that ORE is a proven platform for developing new patient-based measures. “We created ORE to help patients and researchers work together to transform care and discovery that truly serve the patient. Now we’re past the initial pilot stage, and it’s exciting to see members of industry engaging with patients to develop more tools that really measure what matters to patients.”

Actelion will work with PatientsLikeMe to engage people who have MF-CTCL for support and research and to develop and test the tool. PatientsLikeMe welcomes anyone with MF-CTCL who is interested in contributing to join in at www.patientslikeme.com.

Cutaneous (skin) T-cell lymphomas (CTCL) are non-Hodgkin’s lymphomas that primarily involve the skin but can also involve the lymph nodes, blood and other organs. Mycosis fungoides (MF-CTCL) is the most common type of CTCL.

About Actelion Ltd.
Actelion Ltd. is a leading biopharmaceutical company focused on the discovery, development and commercialization of innovative drugs for diseases with significant unmet medical needs. Actelion is a leader in the field of pulmonary arterial hypertension (PAH). Our portfolio of PAH treatments covers the spectrum of disease, from WHO Functional Class (FC) II through to FC IV, with oral, inhaled and intravenous medications. Although not available in all countries, Actelion has treatments approved by health authorities for a number of specialist diseases including Type 1 Gaucher disease, Niemann-Pick type C disease, Digital Ulcers in patients suffering from systemic sclerosis, and mycosis fungoides type cutaneous T-cell lymphoma. Founded in late 1997, with now over 2,400 dedicated professionals covering all key markets around the world including Europe, the US, Japan, China, Russia and Mexico, Actelion has its corporate headquarters in Allschwil/Basel, Switzerland. Actelion shares are traded on the SIX Swiss Exchange (ticker symbol: ATLN) as part of the Swiss blue-chip index SMI (Swiss Market Index SMI®). All trademarks are legally protected.

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

###

Contacts
Samantha Cummis
Actelion USA
+1 650.808.6615
samantha.cummis@actelion.com

Margot Carlson Delogne
PatientsLikeMe
+1 781.492.1039
mcdelogne@patientslikeme.com


“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

Posted August 3rd, 2014 by

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant, she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)

 

 

What was your reaction when you got ‘the call?’ You mention a whole range of emotions on your blog.

The call took me completely by surprise. I’d been admitted to the hospital a week earlier because we just couldn’t meet my oxygen needs at home any more. I was literally 10-minutes away from starting a procedure to suppress my antibodies (to help increase my somewhat slim chances of finding a match) when the nurse walked in and told me they might have lungs for me.  Actually she said they “might, might, might, might, might” have lungs – normally they wouldn’t have contacted me that early in the process, but they had to cancel my procedure just in case. I felt an initial jolt of adrenalin and couldn’t help busting out in a huge grin. I quickly tamped down my euphoria, though. There was still a long way to go and anything could happen.

An hour later when I heard we were moving forward, I burst into tears. A year’s worth of pent up emotion poured out through those wracking sobs. I couldn’t believe my miracle was so close. But wrapped up in my joy was guilt that my chance to live was coming through the death of another.

Until the moment they put me under, my emotions continued to cycle from near manic joy, to fear that the lungs wouldn’t be right, to anguish for my donor and his family. Everyone says it’s a roller coaster, but like parenthood, you can’t really understand what that means until you live it.

What happens between getting the call and going into surgery?

Since I was already in the hospital, there was no mad dash for me. When the team decided to move forward, I was sent down for pre-surgery testing — a chest x-ray and blood work. Then we waited, and waited for a good 12 hours. Finally I was sent down to pre-op at 2:00 AM to get ready for surgery at 3:00. They inserted an arterial line and an IV. And they checked and rechecked my drug allergies and medical history. I was the only person in pre-op, but I still had to recite my name and birth date for everyone who came by!

My surgeon arrived and told me he’d heard about my surgery early enough to make sure he got a good night’s sleep with plenty of time for breakfast. I’d brought a disposable camera to get pictures during surgery, so he talked me through his typical “shot list”. I couldn’t wait to see those beautiful new pink lungs!

Just before I was to head to the OR, the doc got a call from the retrieval team that we were delayed for an hour. He said this was very common — they had to wait for all of the teams to arrive before they could start. We were delayed twice more as teams continued to fly in. When I finally made it to the operating room, I was surrounded by people and equipment. They explained each step as they got me situated on the table, and then the anesthesiologist placed a big mask over my face. Thankfully, I remember nothing until they removed the breathing tube three days later.

Fifteen weeks post transplant – how’s recovery and rehab going?

Full recovery takes about a year, but I am astonished at how far I’ve come in just three months. I went into surgery pretty weak because I didn’t have the energy (or the breath) to move much.  A lot of people told me to keep my legs as strong as possible and I quickly learned why. Post-surgery, I was on high-dose prednisone, which is very hard on the quadriceps – my thighs felt like jelly. Most people are up and walking shortly after their breathing tube is removed. I ended up needing a trach, so it was about a week before I took my first steps. I walked nearly 200 feet that first day and increased my distance and strength every time I hit the halls.

The day after I left the hospital, I returned for my first out-patient rehab appointment. I walked 15 minutes on the treadmill at a smokin’ 0.5 mph. Within a few days, I was up to 30 minutes and started to increase my speed. Now I’m walking two miles a day around the neighborhood and am working hard toward a 15-minute mile. It’s the hardest work I’ve ever done, but it is so worth it!

The one thing that really took me by surprise was the mental part of rehab. Before transplant, my body worked very hard to breath.  Shortness of breath meant my body needed more oxygen. But after transplant, neither one of those was true anymore. It was difficult to accept that I didn’t need to consciously breathe – my lungs could take care of that on their own.  After a week, I would periodically “forget” to breathe and be surprised to discover my lungs were working just fine. When I was walking laps around the halls, I would periodically get short of breath and start to panic – there was no valve to turn up my O2!  The pulse oximeter showed my sats were well into the 90s. I was short of breath because my body was weak, not my lungs. Thankfully, breathing is once again second nature!

What comes to mind when you think back on everything you’ve gone through – diagnosis to transplant?

I went through the same fear that most people do when they are diagnosed with IPF. The prognosis is pretty bleak: no treatment, no cure, progressive. But I decided early on that I was going to live my life as normally as possible – and do everything I could to prepare myself ready for transplant.

I continued to work for nine months, using oxygen at the office. But after two pneumonias, it was clear that my body was too fragile for the daily grind.  Without work distracting me, priorities and perspectives shifted. Everything suddenly had a sense of urgency. There might not be time “some day” to get back in touch with that friend, or tell my brothers how much they really meant to me. I had to let go of the things that had consumed me, like worry and regret, so I would have time and energy to do work on my life “to do” list.

I worried that after transplant, when things returned to normal, I would soon forget the lessons I’d learned. This whole experience has been a journey toward gratitude, and I realize now I will never be the person I was before – physically, emotionally or spiritually. Every morning I give thanks for my first waking breath. Throughout the day, I find the most delightful surprises – like watching a mama squirrel move her babies to a safer home. And sometimes I just stop and marvel at the air passing in and out of my lungs, lungs that once breathed in someone else’s chest. I spent three years quietly saying goodbye to all the things and people I loved. Now I get to spend the rest of my life saying “hello” again!

Additional comments from Lori

We just returned from our celebration trip to Sanibel Island, one of my favorite places in the world. For the first time since my diagnosis, I was able to walk the beach without tanks in tow. The image of Sanibel’s shell-strewn beaches and the memory of that rich briny air kept me pushing forward as first I struggled to breathe in ICU, and then sweated my way through PT and rehab.

At least once a day while we were there, my husband whispered to me “No oxygen”. It felt like a dream, a wonderful, amazing dream. We’ve been going to Sanibel for 25 years. It’s a huge part of our family tradition, and making it back there was an important milestone for me. A plaque on the wall at our beach condo read “If you’re lucky enough to be at the beach, you’re lucky enough.” That’s pretty much the way I feel about everything now!


Seeing [MS]: The invisible symptoms – blurred vision

Posted July 25th, 2014 by

Hidden – invisible – unnoticed. That’s what symptoms for many living MS are like. So how do you explain them to people who don’t understand? The Multiple Sclerosis Society of Australia (MSA) decided to stop just talking about them and start showing what it’s like to live with MS. Their project is called Seeing [MS] and includes nine photographers depicting nine invisible symptoms in a series of single images. And all of them are inspired by the experiences of people living with the condition – these photographs are what life with MS is like for them. We’ll be highlighting them all on the blog over the coming months to help expose the invisible side of disease.

You are now seeing blurred vision

Photographed by Toby Burrows
Inspired by Emma Giunti’s invisible symptom

 


Emma Giunti talking more about MS and blurred vision.

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“In my own words” – PatientsLikeMe member Tam writes about (your) life with MS

Posted July 17th, 2014 by

If you were living with multiple sclerosis (MS) and someone said to you, “Well I get tired too, but I don’t go lay down in bed all day,” how would you respond? Invisible symptoms like pain and fatigue are hard to describe to someone who doesn’t get it or isn’t living with MS. But to try and help everyone better understand, PatientsLikeMe member Tam recently wrote a description of what life might be like for you if MS was a part of your day. Read her post below.

The private, invisible pain of MS

Let me take you on a journey; on my journey. I’m asking for a few moments of your time to take a glimpse at what I experience each moment of each day.

I was given an example, which I will start with. We’ll begin at 8am on a Monday morning by clipping a clothespin on the end of each of your fingers. Not so bad, you may be thinking.

Shower, do dishes, get dressed (fasten a bra, zip and button your pants, tie your shoes), make coffee, pick up a medication and take just the one pill you need to take … do all the normal things you might do each morning without a second thought. Maybe you play classical piano. Maybe you type quite fast. I did. How are you at your hobbies and your passions with your hands impaired thusly? Having trouble with pens, spoons, forks?

Ever had a hand cramp? Add a few of those in…but, instead of being able to stretch your hand for relief, you find that when you do, instead of clothespins you now have mousetraps on your fingers. Continue trying to go about your regular life without giving thought to this. Throughout the next few days, have someone randomly swap clothespins and mousetraps for arbitrary reasons…perhaps you put your hand in water that is a bit cooler or warmer than your hands are happy with – snap! Maybe your hands don’t want to scrub shampoo in your hair – snap! Pet the dogs as you always do when they rub up against your hand – snap!

So, it’s lunch time now and you’d really like a salad. Ordinarily getting all the veggies from the fridge and prepping them isn’t a big deal…suddenly it’s become a chore that is taking much more thought than you’ve ever dedicated to a salad prior. And the amount of time it is taking is staggering. Once again, the sharp knife has slipped out of your grasp because your fingers are becoming a bit numb and your grasp isn’t quite what it should be. This time as it falls, it slices your right hand and you have to pause to deal with this additional issue. Have fun trying to maneuver that Band-Aid!

So now you’ve got a combo of mousetraps and clothespins on the ends of your fingers, a throbbing cut, and you give up on eating the salad after the fork drops to the floor *again*. You reach to the floor to pick up that fork for the last time, you swear, and suddenly a mousetrap snaps on your inner elbow! What the heck! A reactive jerk knocks your cut hand into the edge of the table, which causes a clothespin to pinch on the top of that hand. As those new pains begin working their way up your arm, your shoulder begins to ache. Not really an ache…more like someone jabbed an ice pick into the joint!

You were supposed to be somewhere this afternoon, but you realize that driving would be far too dangerous…and anyway, how on earth are you going to manage a steering wheel when each time you even move your right arm, the pain sears from shoulder to fingertips? You somehow manage to press the right buttons on your phone to call and cancel the plans you’d been so looking forward to.

It’s meal time and your neck is starting to cramp from the tension of trying to figure out something you can prepare for your family while the pain continues to whine at you continually. You aren’t in a great mood, which gets ill looks from your spouse as they walk through the door and ask “what’s for dinner?” to which you growl in reply. “Man, I had a day from hell at the office,” they begin, and you really want to be supportive but find yourself barking, “I also had a day from hell…could I get some help in here?”

After standing on your feet in the kitchen for the usual amount of time to prepare and clean up from supper, you realize that now all your toes have clothespins on them. Maybe a hot bath will help, you think…and proceed to lock yourself in the bathroom while running a steaming hot bath (you’ve always liked them super hot)!

You’re so eager to jump in and relax, just knowing it can only help. But, after a few seconds in the ultra warm water, your legs turn to limp noodles and you are feeling as if you will faint. The room is steamy and now all you want is cool air. But, your legs won’t obey your brain and get you out of the water. After some battle with the plug, the tub begins to drain and you use your last bit of effort to turn on the cold water and let it run over your feet. For a few moments, this helps and just as your breathing starts to slow and you’re pondering how to get out of the tub, the clothespins on your toes turn to mousetraps – snap!

You call for your spouse. No answer. You call a bit louder. No answer. You scream their name as loud as you can, but they can’t hear you over the Monday night football game! At some point, you give up and decide that laying naked in the empty tub, with pain shooting up and down your arms, your feet on fire, that crying is the only thing left to do. The tears flow, with no attempt on your part to control them.

A commercial break prompts your spouse to tap on the door and ask if you’re ok. No you are not ok! “I can’t get out of the bathtub,” you say. “What?” they ask. “I AM STUCK IN THE BATHTUB!” you scream. Your spouse tries the doorknob, and finds it locked. “Just a sec, I’ll get a butter knife to unlock it,” you hear. Wiping the tears from your eyes, you decide to buck up. You hear the door being unlocked from the other side and then a slam as it knocks into the drawer which you left out and is now blocking the door from being able to open.

Sometime later, you are out of the tub after your spouse has wrestled with the door, the drawer, and your wet-noodled legs. You feel ill, too hot and thirsty…you want the fan, ice water, to cool off. Your spouse lovingly abandons his football watching plans to find the fan, bring you ice water, help you dry off…help dress you in your favorite pajamas. He tells you that you need to rest, and suggests if you lay down you’ll feel better. You give in even though you had things you wanted to get done tonight. Maybe a little reading? But you can’t maneuver the book and turn the pages…your hands are both numb and painful. You finally get to the right page, only to fumble the book and it ends up on the floor. Making sure to lay on your left side, because your right shoulder still has an ice pick in it…You. Give. Up. Tomorrow, you think, will be better.

Only it isn’t.

Your legs are not working as they should. You try to get out of bed and collapse on the floor because they will no longer support you. The pain of the clothespins and mousetraps flares again and you find that you now have them running up the backs of your legs, as well. Just sliding your way in a half-crawl down the hall to the bathroom leaves you exhausted. You really don’t have time to care about the rug burns that are now on your knees, because you need to pee. And, in the end, you do not make it to the toilet and find yourself sitting on the hall floor in a puddle that is not the dog’s fault this time. Your spouse is at work and you have to ask your child to come assist you. The humiliation is enough to tow you under, but you put on a brave face and try to make a joke about it, to find something in all this to laugh about.

There is no way for you to get in and out of the tub again to wash off, so you ask for a pile of washcloths and a bowl of water and get to work, slowly. Your child has to clean up the puddle, find clean clothes for you, and do a load of dirty pee-drenched laundry. You are sure you still smell it on yourself. A long crawl back to your room and you decide the floor is just going to have to be where you “are” for today.

After this ordeal, you hope that you can zone out and just survive for awhile, when a zap of electricity shoots through your brain. Your body, quite literally, jolts in reaction. This isn’t part of the clothespins and mousetraps! This is your brain! It happens again. When your body releases the tension and collapses on the floor once more, you realize that someone snuck hot coals under your lower back. Try as you might to remove them, they seem stuck to you and are burning your spine. You cry out in anguish.

This can’t be right, you think. The experiment was only with clothespins and mousetraps! What happened to me? Did I actually faint in the bathtub last night and hit my head? Maybe I should see a doctor, just in case. It takes you 30 minutes to get to the right number in your phone, get it to connect and schedule an appointment. Your appointment is on Thursday afternoon. It’s only Tuesday morning.

Rather than go through each section of the following days, let me just add that by Tuesday night you won’t be able to sleep because now there is an ice pick in your left hip. You also feel like someone shoved a hot curling iron up your wazoo and snapped mousetraps along your “tender areas.” Your arms are weak, sore and barely functioning. You can’t even lift a jug of milk. Your legs vacillate between al dente and so waterlogged they are of no use.

Your spouse takes Thursday afternoon off work to get you to the doctor because you cannot drive, nor can you get from the car to the door of the doctor’s office without assistance. Every movement causes one pin or trap to move and send a new pain. Putting on the seatbelt, your spouse isn’t aware they tapped your shoulder and you try to hide the tears as the ice pick jabs deeper. The hot coals on your back have never cooled. You finally get in with the doctor and begin explaining what has happened this week, and realize that he is looking at you like you’ve grown ten heads. You insist all of it is true and he shakes his head and says, “You look just fine. I don’t see why you’re having such trouble.”

Oh, I forgot to mention…the clothespins, the mousetraps, the ice picks, the coals…they are all invisible. Only you can “see” them, only you can feel them, only you know what is happening with each movement. Your brain begins to realize this wasn’t an experiment, begins to realize that there will be no end to this. That providing endorphins to ‘push through it’ won’t do one bit of good.

There will be no surgery to correct this. No medication will cure it. The most you can be offered is something that *perhaps* will reduce the mousetraps to feel like only clothespins, again. You grasp at it and decide that clothespins are better than mousetraps and you can learn to function in a new way. You forget the person that you were before this past Monday and relegate them to a fond memory which you pull out on occasion for nostalgia…but not too often, because it’s just too painful. A far different kind of pain, but pain nonetheless.

You decide to find things to laugh about, to research potential drugs and supplements which may help. You learn that the myelin coating your nerves is disappearing and the shocks and jolts will only continue to increase over time. You’re making adjustments in life as they are needed; finding tools to help do the things you can no longer do for yourself. Some days there are new mousetraps, new ice picks, new coals. Some days, just getting out of bed to go to the bathroom is all you can manage. There will be no shower, no typing, no phone calls on those days.

Some days you can go outside and enjoy the sunshine, see the blooms on your beloved succulents, watch your dog chase a butterfly. You relish those days and hold onto them during the others. On occasion, you have a really great day: A day when you can ride a few miles in the car without crying out at each bump in the road. You might be able to sit at a quiet restaurant for a few minutes with your spouse and maybe visit a store. You’ll pay for this time, but that’s ok…it’s worth it even if you can’t walk the next day again.

You will endure the comments from the uninformed. How you don’t look like you’re too disabled to work, how *they* don’t take pain meds and never would, that perhaps you just need to exercise more, and why on earth do you have to think about your pain with regard to every move you make. Once in awhile even those who should be informed act just as ignorant and insist that you can’t *really* be unable to work.

You don’t mention the fatigue anymore because far too many people laugh and say, “they get tired too but *they* don’t get to lay in bed all day.” You don’t mention how much it anguishes you when you remember the job you loved and how you wish with all your might that you could do it again. You don’t mention how the neurological damage in your brain makes it so that sometimes you can’t even do grade-school addition.

Sometimes, you’ll smile and nod and pretend those comments aren’t just as hurtful as another mousetrap.  That they don’t sear across your brain like another jolt of electricity passing along the neurons, that they aren’t as harmful as a sudden loss of your ability to walk (again). You don’t mention that emotional stress can be just as damaging to your illness as physical stress. You don’t tell them that their comments are every bit as hurtful as the sharpest pain you feel. You don’t mention the many, MANY other ways that your illness affects you each and every moment of each and every day. That it’s like a tantrum-throwing toddler and all you wish for is that it would collapse on the floor and take a nap and give you a break…for just a few minutes.

Sometimes, you won’t be able to keep the tears back…


For more “In my own words” posts, look here.

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“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS

Posted July 16th, 2014 by

For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve Saling ALS Residence, the world’s first fully automated, vent-ready, skilled service residence specifically designed for people with ALS (co-founder Ben Heywood and marketing team member Jenna Tobey went to visit him at the residence not too long ago).

Steve hasn’t stopped with just one residence – his ALS Residence Initiative (ALSRI) provides an environment where people with ALS and other debilitating conditions can live productive and independent lives. As Steven Hawking said, it demonstrates “the roles of technology empowering the lives of those who would otherwise depend entirely on the care of others. I look forward to living centers such as this becoming a standard for the world.” And Steve is on his way to making that a reality – the ALSRI has opened a new house in New Orleans and is currently building another one in Georgia.

Steve recently shared a story on Facebook about an accident that happened while he was on his way to meet up with friends and generously agreed to share it on the PatientsLikeMe blog, too. He put it all in perspective by talking about the challenges of being unable to communicate with medical staff, and how emergency personnel should be better trained to interact with people who have ALS to avoid potentially life-threatening mistakes. Check out what he had to share below.

A tale of friends, beer and ambulances…

I have always enjoyed drinking beer with friends, and ALS did nothing to change that. All spring and summer, my friends and I get together monthly for beer night. Unfortunately, one time I stood them up.

I had parked the van and was almost to Cambridge Brewing Company. I had to cross Portland Street and had to go down a wicked steep curb ramp, and it flipped my wheelchair on its side. It was really no big deal, but the ensuing ambulance ride could have killed me dead.

I appreciate that it must have been quite a sight as a bunch of people rushed over to help me and my mom. I just wanted them to put me back on my wheels so I could go drink beer, but it seemed like the ambulance got there in seconds. They were super nice, but they are paid to be cautious, and I was away from my computer and my grunting protests could not convince anyone not to take me to the hospital.

That is where things got dangerous. Everyone knew I have ALS, but they strapped me flat on my back on a hard board for the trip to the hospital. They were concerned about my spine, but I am already paralyzed and am more concerned about maintaining an open airway, but I had no way to communicate that. If my breathing had been more compromised, I would have suffocated on the way.

Fortunately, my breathing is without difficulty, even flat on my back. My burden with ALS is drooling. I can drool a gallon a day, and I expected to drown on my own spit on the ride to the hospital. One of the few words I can say is “up,” but everyone thought I was complaining about being uncomfortable and off I went. Miraculously, my body recognized the danger, and I realized I had severe dry mouth so I calmed down and made it to the hospital with my mom bringing my chair and more importantly my computer in the van behind the ambulance. I have to say that they were very nice at Massachusetts General Hospital, and my nurses and doctors were hot as balls. It would be tragic if they had killed me by trying to help me. They wanted to do a CAT scan, but I refused and was out within the hour. The whole experience reinforced my fear of going to the hospital when not able to speak. Hospital ERs and EMTs just don’t know enough about ALS to provide appropriate care. This needs to change.

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