10 posts from May, 2016

Arthritis Awareness Month: Shedding light on an invisible condition

Posted May 27th, 2016 by

It’s National Arthritis Awareness Month, and while more than 50 million Americans live with it, arthritis is often an invisible condition. It can be hard for those who don’t have it to understand what it’s all about and how it impacts a person.

So let’s test your arthritis knowledge — did you know any of the facts below1?

  • 1 in 5 people over 18 live with arthritis
  • Arthritis pain can occur in several places throughout the body including the neck, back, shoulders, and hips — and even in the skin, heart, and lungs
  • Arthritis is an umbrella term used to describe over 100 medical conditions and diseases like gout, lupus, rheumatoid arthritis, and fibromyalgia
  • People often associate this condition with old age, but while the risk does increase with age, anyone can have arthritis

What can you do?

The Arthritis Foundation has launched a #SeeArthritis campaign on Facebook, and over 10,000 people have turned their profile pictures green to raise awareness. If you’re living with arthritis, use the hashtag and go green!

But first, head over to the forum and help us get the awareness going by sharing the one thing you want others to know about living with arthritis.

 

 

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1http://www.arthritis.org/about-arthritis/understanding-arthritis/


“I learned that life is precious.”

Posted May 23rd, 2016 by

Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her.

For ALS Awareness Month this year, Jenna volunteered to talk on camera about how the condition impacted her childhood; sharing how a family banded together to care for a father, husband and friend.

“I learned that life is precious,” she says. “And I learned at an early age that it’s important to do what you love and do something that makes a difference.”

Hear her story!

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Patients as Partners: An open letter from Craig to the “normals”

Posted May 20th, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients.

Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia.

What You Don’t Know About Your Friend’s Fibromyalgia

So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition.

Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ Langer have all acknowledged that they have fibromyalgia.

About 5% of the population — that’s nearly 1 out of every 20 people — have it. Let’s start with a reminder of the more common description of fibro. Fibromyalgia is a complex neurological pain disorder wherein the brain forgets how to evaluate and respond correctly to pain signals in the body and favors a new standard of “If there’s pain present the only level I know is MAXIMUM DISTRESS.”

Let’s dispel a couple of common misconceptions while we’re at it, too:

1: It’s not real pain, it’s only in your head.

This is probably the most damaging and oft-heard misconception about this disorder. Let’s begin by scientifically saying that ALL pain is “IN YOUR HEAD”! Pain is a brain response to negative stimuli. Fibromyalgia pain isn’t suddenly a new experience for the mind; it’s a disorder where the brain begins to mis-categorize pain and reacts to it as though it were “always on” and always worthy of the highest level reaction.

Your friend isn’t overly dramatic or attention seeking. Their brain is indeed reacting to a painful stimulus. They have no recourse but to feel the pain that their mind is presenting to them any more than they could not react to touching a burner on the stove. Take it from a fellow fibromyalgia sufferer; our minds do a great job of sharing that very real pain response within us.

2. Fibromyalgia is a “rare” condition.

The more we research fibromyalgia and the more we know about it, the more we realize that it isn’t very rare; it’s more likely that it’s underdiagnosed and underreported especially among males with fibro. A chronic pain disorder doesn’t sound like a very “macho” condition, and many men don’t wish to seek help with the syndrome for fear of being called unmanly, or wimpish.

Now onto the things you might not know about living with fibro. Any chronic pain disorder such as fibro takes a massive toll on the individual, their partner, and their loved ones. This toll is even worse when those family and loved ones aren’t well informed about the disorder (see misconceptions above). Many individuals living with fibro must continue to work, and their work suffers from sick days and loss of productivity.

Many relationships are tested by fire when one has fibro. It’s difficult for their partner to understand that a medical condition could have SO MANY unrelated symptoms and cause SO MUCH fatigue and pain that one ends up spending most of the day in bed instead of being the alert, energetic and happy person everyone once knew. Families, marriages, and relationships have fallen apart due to the fallout from fibro.

Now I’d like to talk about a term that I like to call the “seduction of the bed.” When you spend the day in pain, go to sleep with pain, and wake up feeling unrefreshed and still in pain, there’s a strong desire just to remain there in your comfortable bed. It’s the only place you can be that minimizes the pain, pressure, and discomfort. I hear my bed calling to me all the time; it’s seductive promise of just a smidgeon less pain if I’ll but give in and crawl back under the warm covers.

Most of us who live with this condition don’t have the choice of staying in bed all day. We have jobs to do in our home or away in an office. We try not to let our pain and fatigue show through the thin veneer of a smile that we wear in an attempt not to draw attention to ourselves. How do we cope with all of this? The day after day after day of constant pain and fatigue slowly begin to take their toll. Finally, we come to understand that we must learn how to prioritize the events in our lives every day and most times we decide those priorities at the very last moment. We have to learn, and help our friends to understand, that yes I accepted your invitation to visit tomorrow, but I must evaluate my fatigue and stamina regularly, right on up to the time of that expected visit to determine if my body is also willing to make that effort.

Sometimes the answer to that evaluation is no. Maybe today was filled with too many of the myriad of seemingly unrelated symptoms that fibro-mites experience. (Warning, the symptoms I’m about to relate aren’t “pretty” or easily whitewashed.) A full day of irritable bowel syndrome (IBS), where we have mind-numbing cramps that double us over in pain followed by the immediate and overwhelming need to rush to the bathroom for a bowel movement. Maybe today was filled with cognitive fog (CogFog), and even the simplest of words refuse to come to mind when we need them in a sentence leaving us sounding like a blubbering idiot. Maybe today is the day where any piece of clothing touching some sensitive part of our body is too painful to endure, and all we can wear are some light underwear or nothing at all.

We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as “flaky” especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice. We have to prioritize the events in our lives continually; all weighed against the insurmountable weight of this little condition called fibromyalgia.

 

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“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien

Posted May 19th, 2016 by

Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year.

Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker.

Back in 2005 when he was diagnosed with ALS, Patrick was making his mark on New York City as a rising filmmaker, DJ, infamous prankster and internet sensation. He called himself “TransFatty,” as a nod to his love of junk food. After his diagnosis, he decided to keep the cameras rolling – on himself. “TransFatty Lives” is the result of a decade of footage that shows his progression with the disease and it’s gone on to win the Audience Choice Awards at both the 2015 Tribeca and Milan Film Festivals.

We visited Patrick last month to chat with him about the film and life in general. Here’s what he had to say.

“TransFatty Lives” is available on iTunes, Amazon, Google Play, and Xbox.

 

 

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What’s your experience with accessing your electronic medical records?

Posted May 17th, 2016 by

Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the front of healthcare discussions. I’m also the link between PatientsLikeMe and government and regulatory agencies.

And that’s what brings me to the blog today. The Government Accountability Office (GAO) is working on a new research study and they want to hear directly from patients like you about your experiences with your electronic medical records. Specifically the team at GAO is interested to learn about your experience accessing your health information electronically for viewing it yourself, downloading it to a computer or other device and/or sending it to someone else of your choosing.

Find out more below about the GAO, this new research project and who to contact if you’d like to participate.

The Government Accountability Office (GAO), an agency that evaluates federal programs for Congress, is conducting research to examine patients’ experiences with electronically viewing, downloading, or transmitting their health information, which will be incorporated into a publicly available report. GAO would like to hear directly from consumers to learn about any relevant experiences they may have had in this regard (e.g., viewing health information in an online patient portal, downloading health information into a personal health record app, sending/receiving health information to/from a physician).

If you would like to volunteer to discuss your experiences with GAO, whether positive or negative, please send an email with your first name directly to GAO at HealthInfoAccess@gao.gov by June 7, 2016. GAO will contact you to schedule a short, anonymous telephone interview at your convenience to discuss your experiences.

GAO will NOT collect any personal information during the interview, such as your full name or other identifying information. In addition, GAO will only ask questions about your experiences electronically accessing your health information, not any questions about the nature of your health information itself. Any information GAO collects from consumers will be published in a manner that protects your confidentiality and anonymity.

Let your voice be heard!

 

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Raising awareness for immunological and neurological health in May

Posted May 12th, 2016 by

Earlier this year, we interviewed Team of Advisors member Craig, who’s living with fibromyalgia. Craig talked talked about the need to raise awareness for “hidden disabilities” like his condition. So today, we’re doing just that. May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs), which include fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

Those living with fibromyalgia or ME/CFS can have many symptoms that aren’t always easy to explain to others. Below, Craig describes a typical day for him in vivid detail:

“Imagine that you’ve just worked one of the hardest days of your life. You are so tired that you can hardly walk. Just changing your clothes is almost more effort than you can handle. Every muscle in your body is aching and tired, and the slightest movement of some of them sends them into a tight painful spasm.”

 

But while fibromyalgia and ME/CFS are both chronic pain syndromes, they aren’t exactly the same. Patients living with ME/CFS experience five main symptoms1, as opposed to the more general symptoms of fibromyalgia:

  • Profound fatigue that impairs carrying out normal daily activities
  • Unrefreshing sleep
  • Cognitive impairment
  • Symptoms that worsen when a person stands up
  • Symptoms that worsen after exerting any type (emotional, physical) effort

If you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 65,000 people are sharing their experiences, along with more than 12,000 living with ME/CFS.


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1https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


Patients as Partners: Gus and Maria talk partnering with your caregiver

Posted May 11th, 2016 by

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how they work together as a team.

How has it been managing your dual roles of husband/wife and now patient/caregiver? What is the biggest challenge in this?

Gus: I believe the hardest thing has been always feeling I was in control and didn’t need anyone’s help or assistance. But how the tables have turned, I lean on my wife more than ever before, with the understanding I try every day to be as independent as possible. I truly see how tired my wife gets and how frustrated this illness has made her feel. I respect her time and appreciate everything she does for me. I sometimes push her towards taking a time out and spending time for her. She needs time for herself and to unwind from all of this.

The listening part sometimes gets very difficult, because I see things and don’t communicate them correctly. It’s so difficult and so frustrating because I just want to get up and fix it. I feel like things are getting better, I try so hard to shut my mouth and then listen.

I sometimes feel bad because I want or need help but I don’t want to bother or ask for it. She will always ask me if I need help and I just say no. I feel bothered inside and hurt because she only wants to help me. But I’m working on it every day.

Maria: Gus and I have always worked together. He always tried to make life as comfortable as possible for us all these years. Other than my continuing to work full-time and having to make sure that he has all he needs, my biggest challenge is making sure Gus is getting the proper nutrition and is made as comfortable as possible so that I don’t have to worry too much about him while I’m at work.

What are some new things you’ve learned about each other throughout this?

Maria: Gus is probably impressed with how I’m slowly becoming more patient. Since he has always been the more patient and nurturing one, I am now somehow finding myself being more like him. And I continue to be amazed by his spirit. Even after such a devastating diagnosis as ALS, he was only down temporarily. Although he isn’t able to do very much physically, he continues to be the head and shoulders of our household. He keeps us going strong.

Can you describe the ways you partner? What works and what doesn’t?

Gus: Living on the same page of life, what does this mean? Having an understanding and knowing when to ask for help and doing the simplest things you can do.

Sharing responsibilities sometimes can be tricky. Our bodies may not function but our minds are just fine. Not making a mess and doing your best in every way possible. And no nagging, this is the worst thing possible. And don’t take her or him for granted because we need each other for support and good health. Counting your wins and telling yourself you got this. Sharing your positive thoughts and negative feelings when possible, not holding things inside. Sharing your wins and losses.

Communicating and openness in all ways will make things so much better. I tell my wife everything, good or bad I don’t have anyone else who understands me better than she does.

Maria: Currently I have just been going full speed ahead – on autopilot – dancing as fast as I can. There are a million things I could come up with but I haven’t yet figured out what works and what doesn’t – still trying. My only tip is to continue to stay as informed as possible regarding ALS research and things people have tried to live more comfortably with the disease. Also to help your partner have a better quality of life by trying to find things that will naturally relieve some of the discomfort brought on by ALS.

What’s the most important piece of advice you can give to other couples in your situation?

Gus: The first word that comes to mind is patience (and more patience). There are no right or wrong ways of doing things, it’s just how both of you react and what action or plans have been discussed. First comes the falling or not being able to use your hands or walking without use of a walker. It’s different for everyone, but the most important part of this process would be communicating and understanding each other’s feelings and how this illness will change everything. It’s hard, and very challenging for my wife, coming and going I can only imagine the feeling or heartache she endures. To have compassion and empathy really helps.

Maria: Stay optimistic – one never knows how ALS will progress. We have found that with the proper physical therapy and nutrition (Gus has chosen to go with massage therapy, acupuncture, and a gluten-free diet) he continues to get around using a walker. And if his swallowing or breathing starts to feel compromised, he lets his acupuncturist know and he’s good for a few days.

Final thoughts from Gus: Take every day step-by-step, don’t feel helpless or sadness, your attitude and thoughts create a better environment for both of you and your family. For me it’s called positive in and positive out, every word or action matters and your facial expression matters the most. You must become a good poker player, not showing what’s in your hand. Because when you show discomfort or anger your better half will feel like he or she is to blame. Yes, it’s tough and not easy, but what can you do, go with it and create the best situation possible.

It’s a fact we all struggle with something. No matter what the issues are, they’re important to us. Some of us may have financial debt issues, and others health concerns, and anything else you could think about. When you are ill, sometimes the solutions are a bit more challenging. And that’s where our partners and caregivers come in. The simplest things are now the hardest or a bit more challenging in completing our tasks. Some of us may not have partners or caregivers, so then what? How do we cope with the issues at hand, where do we go for help? Finding the answers to our questions sometimes may be difficult and strenuous. There are many sites and forums that can assist us like PatientsLikeMe, and other blogs sites associated with partners and caregivers.

Families may not have the resources available to them, finding the information provided will make a difference one patient at a time. Finding help and support is vital – every day someone requires assistance. I believe everyone deserves a helping hand when possible, no matter what. So when your loved one becomes ill and funds are low, they need a place and solutions to their questions and concerns. Sending them to a site may not be the answer, but speaking to them makes it better. Just having someone to listen and allowing them to vent their frustrations is so important. It’s our duty as civilized human beings. Giving back to those who can’t and providing the information is key.

 

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Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Posted May 6th, 2016 by

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the parent who must protect and nurture the child, and do the same for yourself.”

Do I have to diagnose myself to get to the right specialist?

You might. Your family doctor may recommend a certain specialist. Not unusual, but if your problem is seen through too narrow a lens, you may not get the best diagnosis. Is the exhaustion you feel due to a failing heart, or is it due to an indolent blood cancer? Is the stomach cramping due to an ulcer or to a parasite which you brought home from a trip? You may start down a path of specialist to a subspecialist, moving away from a broader review to an increasingly narrow. If this does not make sense, or there is no clear resolution of the problem, this is a time to ask, “What else could it be?”

That may call for a return to the family doctor with all the various reports and tests in hand to review all of them. AND you have been collecting and reading ALL your reports, labs and visit summaries as you go, of course. No one is more likely to read these papers more closely than you. Even if you don’t understand them, which is pretty typical, you will understand the thinking behind your diagnosis. Watch for any errors as to the tests taken. Are they complete? What has changed over time? Are the meds accurate listed? Is there is something that simply does not make sense?

What else could it be?

If things do not improve after a reasonable period — you get to decide that period — or get worse, ask the most essential question, “What else could it be?” This may shift things from a less general diagnosis to one which is rarer, or masked by another health condition. Ask the doctor to justify his thinking, and if what he says makes sense to you. That bum knee may not be the cause of the several new falls. Maybe the new high blood pressure medication from another doctor (or this one) causes you to be dizzy, making you fall, reinjuring the knee. See how this works?

Getting nowhere? Or are they just wrong?

It’s hard to change doctors, especially if the diagnosis seems wrong or if errors have occurred in the process. Patients fear that they will be labeled as trouble makers. They may not think the new doctor will be objective with a colleague’s patient, or that there is not a more accurate diagnosis. How does one ask for a second or third opinion or a referral to a large medical center?  You will have to practice saying, “I know you have been working with me on this for some time, and that you want the best diagnosis and treatment for me. Now it seems time to send me on to another medical center/a more specialized treatment center/Dr. So-and So. I will need to gather all my reports and histories, and know you can make this efficient for me.”

Play an active role in your diagnosis and treatment, and do so at the outset. Patients are too often late to realize this, and far too sick to do so effectively. Don’t hesitate to ask for help from friends and family, and from social workers or patient advocate in the system. Again, be like the parent who must protect and nurture the child, and do the same for yourself.

 

 

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Patients as Partners: Member Peggy on the diagnosis journey (Part I)

Posted May 5th, 2016 by

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed.

 Peggy draws from her own experience with kidney cancer and breast cancer to answer some important questions patients face in their diagnosis journey. Check out what she has to say about advocating for yourself below, and stay tuned for more from her soon!

How do I advocate for myself?

When you need to see a doctor for a new or a recurring problem, you are told to “be your own best advocate.” Sounds good in general, but is it really necessary?

Answer: YES. You have tried to figure out what is wrong and you need help. That sore knee is just not healing, or that odd breathlessness seems more frequent. Your family is tired of your complaints or you just “know” something is wrong.

Practice telling your story to the doctor, completely and accurately, so he might really listen to all of it. He may interrupt you within 18-20 SECONDS, studies show. If you are prepared, you will be more likely to say, “Let me complete my explanation of my symptoms or my family history.”

Before the appointment, write out what has happened — why you need a doctor. Be exact. Say “Seven weeks since my fall,” not, “This happened after our vacation.” Explain that you iced and elevated it twice daily for two weeks, and have been wearing a knee wrap ever since.  Say that you take “extra-strength Advil four times a day,” not that you’ve been popping pills ever since.

Explain any other meds you take and why, any history of being slow to heal, or that you are worried that this could be bone metastases like 10 years ago.

Give the doctor clarity about your situation and concerns as possible. Be honest about the level of pain, the interference with your daily life — that you cannot brake the car with your right leg.

If these are more vague symptoms, start a daily diary. Include shifts in food, bowel or sleeping habits, when and how the dizziness occurs, any medications, new or old and prescribed or not, and your own thinking on these symptoms.

Do some basic research. Check if that new medication interferes with an existing med, and if you are taking it properly — with food, one hour before meals, at night. Older people must be alert to this, as age will affect the ability to metabolize medications. Multiple meds from several doctors? Ask your pharmacist to review them for harmful interactions. Plan to bring all those meds (yes, even the ones which are “just” supplements or vitamins) to the appointment.

 

“We don’t want to be a difficult patient by questioning the diagnosis or the need for some test. Yet these questions may lead to a more accurate diagnosis.”

 

What if my child was the patient? How would I handle this?

Consider a new mother bringing a sick child to the doctor. Both mother and child are “new” at this, but know something is wrong. Mom comes in with specific details — a fever that disappears in the day and is back at night, sudden bouts of diarrhea, pulling at the ear, and so on. The doctor uses these details to diagnose a food allergy or earache, prescribes a treatment and sends mom and child home. But Mom is given a series of things to watch and do. She will know that this should clear up in 8-24 hours, not “pretty soon,” that an increase in fever should be reported, and a very high fever might require a trip to the ER. She communicates on behalf of the child, ready to respond when things go wrong, and knows to take the child to the ER, to the office or to prep for a specialist.

Adults don’t do this for themselves. We take the new drug without discussing others with the doctor. We don’t fill the prescription because the diagnosis “just doesn’t seem right” — but don’t discuss this with the doctor. We hide the excessive alcohol use, or the very odd rash in a very private place, as being irrelevant to the discussion at hand. We don’t want to be a difficult patient by questioning the diagnosis or the need for some test. Yet these questions may lead to a more accurate diagnosis. The thoroughness of the mother with the pediatrician might be a model for all of us who are too passive in dealings with our doctors.

Do I have the right diagnosis?

Keep in mind that a diagnosis is really more a “working” diagnosis. It could change as the treatment and/or the disease progresses. There is often a great deal of uncertainty in that diagnosis, and is based on observations in large numbers of patients, who may or may not be exactly like you.

Keep tracking your symptoms, whether you are given any medication or treatment. Ask the doctor how long it might take to alleviate the problem, what might make it worse or better, and what might require a second visit to the doctor. If the problem persists, reach out to that doctor again with your questions.

 

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A new precision medicine program for ALS patients

Posted May 4th, 2016 by

Last month, we talked about precision medicine and what it could mean for psychiatry. What’s precision medicine again? It’s a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1

Today — just in time for ALS Awareness Month — we’re digging deeper into how it can be used to treat ALS. Our partners at the ALS Therapy Development Institute (ALS TDI) run the world’s first and largest precision medicine program in ALS, and here’s what it’s all about…

How the program works

The goal of ALS TDI’s program is to identify subgroups of ALS and possible treatments for them using a patient’s personal data, genomics and iPS cell technology … and then test the most effective treatments in a clinical trial.2 Check out the graphic below for an overview of what program participants can expect (tap to make the image larger).

 

 

If you’re living with ALS, head over to the forum and tell us what you think about using precision medicine in ALS care — would you participate in a program like ALSTDI’s? Add your voice and let’s learn more, together.

 

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1 www.nih.gov/precisionmedicine

2http://www.alstdi.org/precision-medicine-program/