17 posts from March, 2016

World Bipolar Day 2016 – Share how you’re #MoreThanADiagnosis

Posted March 30th, 2016 by

“What am I in the eyes of most people – a nonentity, an eccentric, or an unpleasant person – somebody who has no position in society and will never have; in short, the lowest of the low. All right, then – even if that were absolutely true, then I should one day like to show by my work what such an eccentric, such a nobody, has in his heart.” – Vincent van Gogh

Today, March 30, 2016, is World Bipolar Day, celebrated on the birthday of artist Vincent van Gogh, who’s believed to have had bipolar disorder. Sponsored by our friends at the International Bipolar Foundation (IBPF), this year’s theme, “More Than A Diagnosis,” focuses on how people with bipolar are many things beyond their condition. Check out the IBPF’s page for resources and ways to get involved.

And if you’ve seen the conversations with new member Paul in the last month surrounding the release of his debut feature-film, Touched with Fire, then you’ve seen firsthand how someone living with this condition is capable of living a successful life full of creativity.

Check out the forum where members have been sharing how they’re #MoreThanADiagnosis. And don’t forget to connect with the more than 10,000 members living with bipolar disorder in the mental health and behavior forum on PatientsLikeMe.

 

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Digital Health Authority Monique Levy Joins PatientsLikeMe

Posted March 30th, 2016 by

New head of Customer Strategy and Value Delivery brings 20+ Years  of research and commercial experience to the role

CAMBRIDGE, Mass., March 30, 2016—PatientsLikeMe today announced the appointment of Monique Levy as Senior Vice President, Head of Customer Strategy and Value Delivery. In the newly-created role, Levy will use her extensive experience to shape how PatientsLikeMe’s life science partners leverage patient-centered strategies and technologies to transform their operations and meet emerging patient needs. Levy reports to Executive Vice President Ed Godber, General Manager, PatientsLikeMe Health.

“As a researcher, an advisor to global pharmaceutical leaders, and a developer of healthcare programs for large organizations, Monique has spent the last 20 years foreseeing trends in technology and healthcare and helping companies stay ahead of them,” said Godber. “We’re fortunate that her strong track record and strategic thinking will now benefit our partners as they look to integrate the patient perspective within their businesses.”

Levy, who serves on the Google Health Advisory Board, has most recently excelled in the business intelligence industry. Before joining PatientsLikeMe she was Vice President of Research for the Digital Innovation team at Decision Resources Group. In this role she helped life sciences and technology companies understand how patients, providers and payers are using technology for health, and advised businesses on how to adapt and succeed in fast-changing markets. Levy spent the earlier part of her career in the medical and public sectors, working at global institutions including The World Bank. She also co-founded a bed net business in Zimbabwe for malaria prevention.

“This is an extraordinary time in healthcare. The focus on outcomes, the consumerization of the healthcare industry and major advances in technology are all aligning to cause disruption, promise and opportunity for both patients and businesses,” said Levy. “It’s a wonderful time to be at PatientsLikeMe and part of such a talented team that can drive patient-centered change.”

Levy is a frequent speaker at healthcare conferences and a media commentator. She holds a bachelor’s degree in international health and development from the School of Foreign Service at Georgetown University and a master’s degree in clinical health psychology from the Ferkauf Graduate School of Psychology.

About PatientsLikeMe
PatientsLikeMe 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 #dataforgood: 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
+1.781.492.1039


Study results: What patients like you said about sleep medications

Posted March 28th, 2016 by

Over a year ago, we partnered up with Merck Pharmaceuticals to learn more about insomnia and sleep medications. More than 1,200 PatientsLikeMe members responded to questions about how long they’ve had sleep problems, what treatments they’re using, what interferes with sleep most and what their overall quality of sleep is like.

Here’s what we uncovered (tap each graphic for a larger view).

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“Each day is different and you do what you can” — Member Rick shares his story for Myeloma Action Month

Posted March 25th, 2016 by

Rick on vacation in Hawaii

A few weeks ago, we shared Marcia’s story for Myeloma Action Month. Today, we’re introducing Rick (ricktowner), another member of the multiple myeloma community.

Before he was diagnosed in 2012, Rick and his wife led active lives volunteering in private, state and federal parks. Now in remission, he still travels when he can and rides a recumbent trike for exercise.

Below, Rick describes the difficult process of getting diagnosed, what his “new normal” is like, and how acupuncture has helped him manage his pain.

Tell us a little about yourself. What do you do to stay busy and engaged?

I am 68 years old, retired and once in remission, we returned to traveling in our RV during the summer months. We hope to return to volunteering in national and state parks, especially as interpretative hosts at lighthouses. We also like to take a cruise each year. I play table tennis twice a week at our senior center and also do volunteer work there. I have purchased a recumbent trike that I can ride with out falling (doctors said falling would be a disaster due to the amount of bone damage I have) to help with exercising. I had to do something different as snow skiing was now no longer an exercise option for me.

How would you describe living with multiple myeloma (MM) to someone who’s never heard of it?

Discovering you have MM can take some time as most primary doctors are unaware that back pain (bone pain) and anemia are symptoms of MM. From my first symptoms to diagnosis it took six months and then it was because my L1 vertebrae fractured and I was in excruciating pain. It takes a specific blood test looking for that M protein spike to confirm MM, because MRIs, CAT and PET scans show no specific tumor causing the many lesions one may have.

At the beginning, treatment and doctor appointments take up the majority of your daily time. Pain is with you constantly, usually from bone damage to the spine, as well as fatigue. You definitely need a willing caretaker as you probably can’t do what you use to do to take care of yourself. I didn’t drive for one year because of chemo brain and bone pain. Living with MM after remission is what my wife and I call the “new normal.” Due to bone damage and maintenance drugs to help you stay in remission, you never return to the “normal you” again. Fatigue is a daily thing you fight with exercise and if you are on Revlimid for maintenance, you can count on individual days of diarrhea which keep you close to home. You learn that each day is different and you do what you can according to how you feel.

Rick at the Carson Tahoe Cancer Center in Carson City, NV

You’ve been in remission since 2012 — what has your treatment experience been like?

I started out on a three-drug cocktail, Revlimid, Velcade and Dexamethasone for six months prior to remission. I was one of the lucky ones that this worked great for me. I also had 15 days of radiation to kill some of the major lesions on my spine and pelvis. I am now on 10 mg of Revlimid, 21 days on, seven days off for maintenance. At a recent check up at Huntsman Cancer Institute in Salt Lake City, UT, I was declared in complete remission by the oncologist I saw there. I still do blood tests every three months with my local oncologist and check in at Huntsman Cancer Institute once a year. I have found all medical practitioners I have come in contact with to be very caring about me as an individual which has helped immensely in my attitude about my condition and what I can do to help myself.

You’ve spoken positively about acupuncture therapy. How has it helped your multiple myeloma?

I have four spinal compression fractures, kyphosis of the T4 & T5 and two areas of spinal stenosis. I was on Fentanyl patches I had to change every 48 hours for pain and Percocet for breakout pain. Being on the Fentanyl patches was very limiting to what I could do and how long I could be away from home. So I decided to try acupuncture. I started out with two treatments a day for 15 days while I weaned myself from the Fentanyl. I then did treatment twice a week for one year to get my body totally pain free. I now do one treatment every two weeks to keep the pain under control. If I go longer than three weeks without treatment the pain starts to return. However, it is easier to find an OMD (Oriental Medicine Doctor) acupuncturist than to try and get narcotics when I am travelling in my RV or taking a cruise for 15 days. Acupuncture has greatly improved my quality of life.

What has your experience been on PatientsLikeMe? What benefits have you seen from tracking your symptoms and quality of life?

All cancer patients should look for some kind of support group. PatientsLikeMe is one of mine. It is encouraging to learn how others with MM are doing, what their treatments are and how they are coping day to day. The daily “Today I feel” is a great way to chronicle how you are doing daily so you can see trends. Quality of Life and LAB tracking also helps in showing trends on how you are progressing in the fight against MM. The “Today I Feel” area helps you get in touch with others and others get in touch with you. This allows you to share with others who have the same condition you do and helps you understand that what you are going through is normal for MM patients. I enjoy giving and receiving encouragement from others on PatientsLikeMe. I also like the fact that what I post is used in research to help other MM patients.

 

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Joy Morel Joins PatientsLikeMe

Posted March 23rd, 2016 by

Veteran of Leading Tech Brands to Direct B2B and B2C Marketing Strategy

CAMBRIDGE, Mass., March 23, 2016—PatientsLikeMe today announced the appointment of Joy Morel as Senior Vice President, Marketing, Patient Engagement and Business Intelligence. A global marketing strategist with both business-to-business and business-to-consumer branding experience, Morel now leads the 25-person team that focuses on attracting and engaging new members and business partners to the patient network, and bringing greater value to the community. She reports to Michael Evers, who was recently promoted to Executive Vice President of Marketing, Technology and Operations.

Morel’s marketing skills have been well honed at several leading business and consumer technology companies, including Verisign, TomTom/Tele Atlas and AOL. Before joining PatientsLikeMe she was Senior Director, Global Branding, Advertising and Creative Services for Verisign, responsible for the main marketing vehicles that attracted new customers to the domain name and Internet security provider. She also held senior marketing positions at BroadMap, LLC and TomTom/Tele Atlas, where she developed both direct-to-consumer and business-to-business go-to-market strategies. At AOL, Morel executed and managed major media campaigns. She started her career at ASTA as a marketing manager.

Evers said Morel’s range of experience in technology-focused companies and track record of developing creative and impactful marketing programs will be important guides as PatientsLikeMe grows. “Joy’s leadership will help ensure we expand our reach so we can ultimately help millions of people track their health, learn about living with disease and connect with others for information and support. We’re absolutely delighted that she has joined us.”

Morel said she was attracted to PatientsLikeMe because of its core mission and people. “It’s rare you find an opportunity to work on something that can actually change lives, with people who are aligned behind and energized by an important mission. I wanted to be a part of it all, and I’m looking forward to putting my head and my heart into it.”

Morel holds a bachelor’s degree in marketing, communications and psychology from Virginia Polytechnic Institute and State University.

About PatientsLikeMe
PatientsLikeMe 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 #dataforgood: 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

 

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
+1.781.492.1039


Brain Injury Awareness Month: Roxana’s story from our partners at One Mind

Posted March 21st, 2016 by

March is Brain Injury Awareness Month, so we’re sharing the story of Roxana Delgado, whose husband Victor is one of the 2.5 million Americans who survive traumatic brain injuries (TBIs) each year.1

In this video from our partners at One Mind, Roxana opens up about the challenges of caring for Victor after he suffered a TBI while serving in Afghanistan in 2009. Roxana says, “Research is something that is needed to be able to meet the needs of this population, to identify, diagnose and treat brain injuries.”

Here’s what else she has to say:


Having trouble watching the video? Click the button below:

If you’ve been recently diagnosed with a traumatic brain injury, share your experience and connect with more than 5,000 TBI members in the injuries and traumas forum on PatientsLikeMe.

 

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1 http://www.biausa.org/brain-injury-awareness-month.htm


Meet Laura from the PatientsLikeMe Team of Advisors

Posted March 16th, 2016 by

 

We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus.

Laura has spoken before the FDA, regularly blogs about IPF on various social platforms and recently started a support group at a local pulmonary rehab center. When we caught up with her, she told us: “I never thought this would be my path but it has been very rewarding.”

Below, Laura opens up about the loneliness of living with a chronic illness and how important it’s been for her to connect with other patients who know what she’s going through.

What gives you the greatest joy and puts a smile on your face?

My grandbabies, both children and animals. Both have no expectations of my limits and love me unconditionally. No matter what they do they make me happy. Soon I will be a great-grandmother and the joy of knowing I’ve lived to see it is a blessing.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I try to keep it very simple for those that do not understand IPF. I tell them I have Idiopathic Pulmonary Fibrosis which is scarring of the lung…that my lungs will fill up with scars and there is no cure and currently the only treatment is one of two pills that may slow the progression or a lung transplant. Anything more than that and you lose their interest. If they ask for more information I give it, otherwise I don’t.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

To take a deep breath and learn everything they can so they can empower themselves.

How important has it been to you to find other people with your condition who understand what you’re going through?

Very important! I have a chronic, fatal terminal illness. It’s a very lonely place to be. The only one that understands the shift in moods is someone who is where I am.

 

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A year of milestones for Team Gleason – and they’re not slowing down.

Posted March 15th, 2016 by

Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved a year of milestones.

Check out their year in review:

January: While attending the State of the Union Address, Steve had a meeting with Secretary Burwell, the Heads of Medicare and Medicare Advocacy, and leaders in the House and Senate.

April: In Los Angeles, the “Gleason” Project Red Carpet Premier took place and IMG Films announced their full support and partnership on the documentary film.

May: Microsoft released eye drive technology research as a viable solution for mobilizing power chairs. Through their alliance, Team Gleason is working with Microsoft to make this technology more widely available while Steve continues to test it.

Later in May, Steve addressed the Louisiana Legislature and leaders at the Department of Health and Human Services to advocate for benefits for those most vulnerable.

June: Team Gleason participated in the #SmackdownALS campaign with Microsoft in the Cannes Lions International Festival of Creativity. Also in June, Steve received the George Halas Award by the Sportswriters Association.

July: After unanimously passing both the House and Senate, the Steve Gleason Act was signed into law by the President of the United States on July 31st. This law ensures full access to and ownership of communication devices through Medicare.

September: Team Gleason initiated Answer ALS and announced $22 million in funding for its research focus.

October: On October 1st, the Steve Gleason Act went into effect! (Side note: Yes, even though it was signed into law in July, this reflects Medicare timelines that impacted the date it went into effect.)

November: Team Gleason and Answer ALS partnered with the NFL and KBS to create the ALS Awareness campaign, “Game Changer.” The first NFL ALS campaign boldly states, “The NFL has had 1,000s of game changers. ALS needs 1.”

December: The documentary, “Gleason,” was accepted into the 2015 Sundance Film Festival. “Sundance with Steve” is the 30-minute special about the premier of “Gleason” at the Festival in January.

And there’s no rest in sight for Steve and the friends and family who make up Team Gleason. When asked what are some things they plan to take on this year, Associate Executive Director Clare Durrett had this to say:

“While we feel like we have reached some of our goals this past year, there is still so much to do. Much of 2015 was focused on addressing access to Assistive Technology and ultimately the passage of the Steve Gleason Act, but that issue was just one small cog in the wheel of challenges for people living with ALS.

“Our goals are to continue pursuing more advanced and innovative technology, while finding avenues to make it more accessible and affordable. We will always continue our mission to provide equipment and technology, create and offer adventures for people living with ALS and work toward increasing awareness for an ultimate treatment or cure.

“We are so thankful for forums like PatientsLikeMe. It is such an incredible resource for people living with or caring for someone with ALS to get shared information on life with ALS.”

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How MS affects pregnancy — from our partners at MotherToBaby for MS Awareness Month

Posted March 14th, 2016 by

It’s MS Awareness Month, and this year, we’re focusing on how the condition affects pregnant women and their babies. Our partners at MotherToBaby recently shared an article that answers some of the questions that might come up for women who have MS and are thinking about having children. Check it out below…

MS: The Diagnosis That Doesn’t Mean Missing Out On Motherhood

By Neda Ebrahimi , Teratogen Information Specialist, Motherisk

As a counselor with Motherisk, the Canadian partner of MotherToBaby and a service of the Organization of Teratology Information Specialists (OTIS), I hear many stories from women about pregnancy. Some of those stories strike cords with me. Their urgency and desire to make the healthiest decisions possible for their future children is both understandable and admirable. In honor of National Multiple Sclerosis Awareness Month, I give you Nina’s story.

Nina’s Story

“I’m 31 years old, and I was diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS), when I was only 22. My first relapse was scary. I was writing my finals, and 2 days before my last final, I lost sight completely in one eye, and my legs felt so week and wobbly that I couldn’t stand even for a second. After going to the hospital and receiving several courses of steroids over 10 days, I started to improve but it took 2 months for my symptoms to fully resolve. And then, everything went back to normal, as if nothing had ever happened. I received my diagnosis several months after, and it felt like a death sentence. I had 2 more relapses before my doctor put me on disease modifying drug (DMD), and I started with Infterferon-B1a. Over the last 8 years, I only experienced 5 more relapses. The last relapse I had was only a few months ago; I lost sight in my left eye, and numbness that ran from my face to my toes on just the right side of my body. I have always been able to work full-time except when I’m experiencing a relapse, for which I’ve had to take a month off. I am a dentist, so not surprisingly I can’t carry out my job when I’m experiencing numbness in my hand. I met John 5 years ago at the MS clinic I used to visit. He was a nurse there. We fell in love, and despite of my illness he proposed to me last year, and we talked about having a family, with two children, hopefully one boy and one girl, and living happily ever after. It didn’t initially worry me that one day I may want children. John is crazy about kids, and I feel my maternal instincts kick in every time I hold a baby. Since we got married, my anxiety has been increasing proportionally to my yearning for having a child. I know my MS can’t be cured, at least not now, I know it can get worst over time, and eventually I may need support to carry out even simple tasks. Or Maybe I won’t, and I would be one of the few who never enter the progressive state. I don’t know if I’ll be able to care for a baby and meet his or her demands. What will happen after my pregnancy? I really don’t want to experience another relapse after I deliver. How am I going to manage my illness, and what will happen if I need to came off my DMD when I’m pregnant or breastfeeding? There are so many questions, and I don’t know who to turn to.”

Nina is not alone in her thirst for answers. MS is an autoimmune neurological disease with very different presentation. No two MS patients are exactly the same and symptoms can vary from just the occasional mild tingling in the finger tips to more severe symptoms that render the patient unable to walk or stand for several weeks. With Relapsing Remitting MS accounting for 85% of all MS cases, most patients will undergo a remissive state after an attack, and will resume their daily life with little or no hindrance. Some patients will continue to have modest symptoms during the remissive state which they learn to adapt to and manage by different medications and or lifestyle changes. As there are no current cures for MS, many MS patients live for decades with this disease, and must find the means to maintain a high quality of life as the disease progresses, which can be challenging in the later stages of the disease.

MS impacts many more women than men with a 3:1 ratio in North America. As the disease onset occurs during the reproductive ages, many women with MS face the dilemma of pregnancy at some point during their lives. Young women, like Nina, with MS planning pregnancies, have many questions. Because the disease presentation and progression varies from person to person, there is no exact answer and treatment and management must be tailored to the specific person’s need. However, I’d like to address some of the most common questions to help all of the “Ninas” out there:

1. “Would the disease adversely impact the pregnancy and my developing baby”?

Up until the late 1950s, women with MS were advised to terminate their pregnancies. With our advancement in the field, we know that this is almost never necessary. Many women with MS continue to have healthy babies, and research shows that there is no increased risk for having a baby with a structural malformation or developmental delay and many deliver healthy babies with no major complications. Although there is a trend toward lighter weight babies, the birth weight percentile remains in the normal range for most. Another observation has been the higher rate of miscarriage in the MS population with mixed results from different studies. The reason for this is not well understood, but the majority of miscarriages are in early pregnancy. While miscarriage rates in the general population are around 10-15%, in women with MS the rates are closer to 20%-30%. With successful conception, the chance of delivering a healthy baby at term is high, and women with MS should be assured that their disease is unlikely to cause harm to the developing baby.

2. “Would my baby also have MS”?
There is a complex interplay between genetics and environment leading to MS. While the risk of getting MS in the general population is 0.3%, having a parent with MS will increase this risk by almost 15 times. So children of women with MS may have a 3% to 6% chance of developing MS later in life, but the environmental and lifestyle factors may play the ultimate role in disease manifestation. Hence despite the genetic contribution, the risk for your baby developing MS remains small and can potentially be modified.

3. “If I stop my DMD when planning, what are the risks of having a relapse while I try to conceive?”
Depending on how long it takes to conceive, the drug free period prior to pregnancy may be a risky period for experiencing a relapse. While some women conceive after just one cycle, many will conceive after several months of actively trying to become pregnant. It will take 1 to 3 months (depending on the drug) to fully clear the system, and during this time, some may experience disease activity. If prior to starting the DMD you had very active disease, there is a risk that you’ll experience a relapse when you stop the medication, especially if it takes more than 3 months for you to conceive. The decision to continue DMDs is highly individualized and is determined on a case-by-case basis. You and your neurologist will determine the best mode of action.

4. Would having a pregnancy make my MS progress faster?
Pregnancy has not been shown to speed the disease process. In fact, pregnancy is a state of remission for many women with MS, and a time for optimal wellbeing. It is well established that relapse rates reduce by 70% by the third trimester of pregnancy compared to the year prior to pregnancy. However after delivery the relapse rate increases, with 60% of women experiencing a relapse in the first 3 to 6 months postpartum. While the risk is increased in the postpartum period, the course of MS tends to return to its baseline, and no worse than what it was in the year prior to pregnancy. Some studies have found a protective effect with pregnancy, with a delay in the long-term disease progression; however, more studies are needed to confirm this finding.

5. Would I be able to continue my DMD through the pregnancy?
Although many women with MS go through remission in the pregnancy, some will continue to experience disease activity especially in the first two trimesters. The decision to continue DMDs is dependent on several factors, including the type of medication, disease activity in the year prior to pregnancy, and the type of control achieved with the given DMD. The use of glatiramer, Interferon Beta 1a/1b, in pregnancy have not been associated with an increased risk for malformations and if you achieved great control with these drugs, and are at a high risk of relapsing, your physician may consider continuing your therapy through the pregnancy. The newer drugs, especially the oral DMDs, have not been well studied, therefore it is recommended that you discuss with your neurologist the best plan for the course of your pregnancy. There are ongoing research studies looking at the outcome of pregnancies following exposure to these medications. MotherToBaby and its affiliates are engaged in such studies. For study information or for the most up-to-date information about newer medications used to treat MS during pregnancy, call from anywhere in North America toll-FREE 866-626-6847.

6. What if I have a relapse during pregnancy?
While relapses during pregnancy are uncommon, they may happen, and can be quite severe for some women. Steroids are usually used to treat those relapses, although some success has been shown with IVIg therapy as well. A women that experiences a severe debilitating relapse during her pregnancy, may require the standard steroid therapy, while a women that experiences a mild flare-up may choose, in collaboration with her physician, to abstain from treatment. Systemic steroid use in the first trimester has been associated with a very small risk for cleft lip and palate, and use in the second half of pregnancy may increase the risk for having a smaller baby and for delivering prematurely (before 37 weeks gestation). However, it is recommended that you speak with your health care provider before you stop or change any medication. The benefits of taking a steroid and treating your condition should be weighed against these small possible risks. For more information, check out this fact sheet online: http://www.mothertobaby.org/files/Prednisone_6_13_1.pdf or call anywhere in North America toll-FREE 866-626-6847.

7. Should I breastfeed or start my DMD right after delivery?
The postpartum period is a period with a high risk of experiencing relapses. Data on whether breastfeeding has protective effect has conflicting results. Some studies suggest a protective effect, possibly due to the delay of menses returning, while others show no impact. Information on safety of DMDs in the breastfeeding period are scarce, however given the large molecule size of glatiramer acetate, and Interferons, it is unlikely any will transfer into milk. If they do, they are likely not to be absorbed from the baby’s gastrointestinal tract. There is no information regarding other DMD usages during lactation. The benefits of breastfeeding baby are numerous, but, ultimately, your functionality and ability to care for your child take priority. The decision to breastfeed or not may depend on your ability to breastfeed, especially since the demands of a newborn and the hormonal changes in the postpartum period can be very taxing on your energy levels and if you experience chronic fatigue due to your condition. Thus, if a woman (while consulting her physician) decides to breastfeed she may do so. However, if she needs to restart her DMD, currently she may be advised to stop breastfeeding.

Bottomline: While having MS poses physical and emotional challenges, it does not jeopardize a woman’s capacity to motherhood. With careful planning and close collaboration with your doctors and healthcare providers, and especially with some support from family and friends, you will be able to have successful pregnancies, healthy children, and out of control teenagers, just like any other woman. So if becoming a mother is something you have always wanted and looked forward to, having MS is more of a bump in the road rather than a life sentence, and with some maneuvering you can achieve your dreams. Happy parenthood!

 

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“It does not define me!” Member Marcia shares her story for Myeloma Action Month

Posted March 11th, 2016 by

March is Myeloma Action Month, a time to raise awareness for the second most common blood cancer that affects 750,000 people worldwide — and over 2,500 PatientsLikeMe members. One of those members is Marcia (marcia_holman), who was given six months to live when she was diagnosed. Fifteen years later, Marcia sat down with us to talk about her experience, share some advice for newly diagnosed patients and remind everyone that “multiple myeloma made me a patient but it didn’t take away who I already was.” Here’s what she had to say…

You were diagnosed with multiple myeloma in 2001. In your opinion, how has the treatment options and understanding of the condition evolved over the last 15 years?

When I was first diagnosed with stage #3 multiple myeloma, I had 90% myeloma cells. I was very sick with pneumonia, broken ribs from coughing and kidney failure. City of Hope hospital in Duarte, California, treated me aggressively with four major chemo drugs. I was in the hospital the first time for 30 days then out for one week. This went on each month for six months. I was put on Thalidomide and was gradually increased to a maximum dose of 300 mg. I was also taking dexamethasone. At this time this was the only drug that they were treating multiple myeloma with. Since then many more drugs have been released to treat myeloma. Now they are finding that combinations of two or three of these drugs work well. This last year I believe there were four new drugs approved and of course as they do this research they are understanding this disease more. They now realize myeloma isn’t just one disease but several different diseases and treatments vary. What works for one patient may not work for another. What is very exciting for me is the work they are doing with immunotherapy, where they take out your T cells and engineer them in a lab to recognize a certain marker on the myeloma cells. They are then introduced back into the patient where it kills myeloma cells. I am very excited about what is coming in 2016. I believe it will be a great year for multiple myeloma patients and maybe even a cure. I am always hopeful.

You joined PatientsLikeMe back in June 2015, and already have been very active on the site, even rallying other members to take part in our #24DaysOfGiving campaign in December. What keeps you coming back?

When I found the PatientsLikeMe site I was very excited to have a chance to talk with others that are going down this complicated journey with me. I found support and comfort from the myeloma patients. I was able to learn from their experiences and them from mine. I was able to give them hope as I have been a 15-year survivor. They are my myeloma family! I also wanted a way to be useful. I am a registered nurse and not able to work any longer but I long to. I miss caring for people! I feel this has given me an opportunity to give back, pay it forward, for all the support and care I have been given. I feel good when I can help others. That’s who I am! The December #24DaysOfGiving I thought was such a good idea. Anything to help research or help the myeloma community benefits us all. Thank you for the opportunity!

Do you have any advice for newly diagnosed patients?

My advice to a newly diagnosed patient is: 1. Do not panic! Take one day at a time! 2. The best thing you can do is educate yourself. There are several websites, such as, MMRF, IMF, and Myeloma Central that are terrific with firsthand knowledge of the latest in treatments. 3. Talk with your doctors, find out what your options are. Make yourself part of the decision making. Be a team member with your medical team. 4. If you have a faith, pray and ask for prayers. You are in God’s hands! 5. Don’t be afraid to ask for help. It was one of the hardest things I had to learn to do. Just remember your loved ones and friends feel helpless and want to be able to do something so you are being a blessing to them! 6. Connect with others going down this journey with you. You are not alone! You can be a blessing to each other!

What in your life makes you more than your condition?

I am many things! Before I became a patient I was a wife, a mother, a sister, a friend and a registered nurse. After diagnosis I was still a mother of five beautiful children, a sister, a friend, a registered nurse and a grandmother to 11 wonderful grandkids. Multiple myeloma made me a patient but it didn’t take away who I already was. It does not define me! It is an important part of me but I am so much more and wear many other hats! I am a woman and can multitask!

 

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Touched with fire: Reframing the dialogue of bipolar

Posted March 10th, 2016 by

We’ve talked a lot with new PatientsLikeMe member Paul, diving into issues like getting a diagnosismanagement and coping, and overcoming stigma.  Now, Paul is sharing how he’s trying to change the conversation about bipolar through his debut feature film, Touched with Fire.

Here he talks about framing Touched with Fire as a love story because in a condition defined by emotional extremes, he says that having those extremes take on the form of love “outshines any clinical label or diagnostic book that you’ll never see it in the same way again.”

Watch how Paul is changing the dialogue around bipolar:


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Meet Angela from the PatientsLikeMe Team of Advisors

Posted March 9th, 2016 by

Say hello to Angela, another member of your 2015-2016 Team of Advisors. When she was diagnosed with MS in 2010, Angela was writing a book while balancing a busy schedule as a university lecturer and community volunteer.

Angela sat down with us recently to talk about the new challenges of leading the life she wants with MS, and described the isolation that can come with living with an “invisible disease.” Below, she shares why she always keeps a notebook handy and offers some advice to others with chronic conditions: “Turn your focus outward. Look for ways to give back.”

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Biggest obstacle so far? The natural perception we have that if someone looks “normal,” then they must not be ill or incapacitated. Have you ever been critical of someone parking in a handicapped parking space because that person got out of the car, walked into the store, and appeared to be fine? Invisible diseases may require huge amounts of energy just to walk that shorter walk. On the other hand, friends try to encourage me by their comments: “Oh, I forget things all the time!” “I’m fumble-fingered and clumsy, too!” “I can’t come up with words either!” All of these comments are well meaning, but their effect is to negate my difficulties. They don’t understand the isolation that comes to patients with chronic conditions when their symptoms are trivialized.

I am learning to reframe my MS symptoms because I do want folks to gain a better understanding of the disease. “What is normal for you?” I’ll ask. “What are you able to do well all the time without thinking about it?” Since I’ve always been a doer, friends will often say, “You do so much. I’d get tired if I did half as much as you do.” Fine. But if, all of a sudden, you could only do half of what you do now, would you be satisfied that things were fine? Take your daily schedule and cut it in half. Would that be okay with you? Take your productive work, your family time, your household tasks, your leisure time, your shopping, and your time with friends, and cut each time in each area in half. What would you get rid of? What could you happily leave out? Understand that the other half of your time then, would be spent recovering from the activities you want or need to do. Think about it.

I tell these things and at the same time don’t want to be a target of misguided compassion. I don’t want pity. I do want understanding. Don’t we all?

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

MS — I have it. It does not have me. But is that really true? Most of the time, I agree. I am not living as if I’m bound to this disease. We are, however, inextricably intertwined. Those alien t-cells (in MY body, generated by MY body — not so alien after all) are attacking the precious myelin covering the nerve cells, garbling and slowing the messages to my legs, hands, bladder, voice, and eye. A war goes on inside of me — a civil war, sort of brother against brother, if one can personify cells. I can’t count on my memory or my senses to properly orient me in space and time. Friends think that sympathizing by saying they forget things all the time or are also tired a lot will be helpful to me, but its effect is to minimize what I’m going through. But it’s not normal. I have MS.

In MS, the idea of normal takes on different connotations. My normal is tingling, numb feet, checking to see if I really am wearing socks when I’m not, looking through a right eye that always seems to have a bit of Vaseline on it, tingling, clumsy fingers, and wondering how long it will take to go to the bathroom or if I can go at all. These symptoms are the current background noise of my MS. Dropping things, loss of place, brain fog, drunk walking, reading a book to a roomful of 8 year-olds when I sound like I have marbles in my mouth or have had a couple of bottles of wine for breakfast, debilitating leg spasms that come on so quickly and painfully that the neighbors must think another murder is happening when the upstairs windows are open—these are a few, but by no means all, of the additional symptoms of this weird disease.

Cognitive issues also rear their ugly, scary heads. As I stood in line at the local supermarket, the man in front of me said something about going to the next check stand. He looked right at me, but somehow, I thought, he couldn’t be talking to me. And then the checker said I could go into the next line. Me? I glanced over at the next line in befuddlement. Are they really talking to me? I was confused, stuck in a bizarre place not connected to my usual competent social self. Hours passed, it seemed, and then I got it. A new checker had opened the register and was waiting for me as “the next customer, please.” My confusion eased and I recovered, smiled my thanks and went to the next line. This loss of place doesn’t happen often, but often enough that I am on guard for it.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Give yourself time. On the emotional roller coaster you’ll ride in the first year after diagnosis, the highs and lows you experience may be overwhelming. Don’t deny them. And then take a breath and continue to breathe. Get on with your life. For me, the relief of finally knowing that all the strange symptoms I experienced were MS and not lupus or a brain tumor was huge. Realizations about how your life will change can come slowly or hit you in the face. At each realization, take another breath and start building a team of those you can count on.

Be grateful. In the end, life’s not all about you. Sitting in a pity party for very long, focused only on yourself is no place to stay. Turn your focus outward. Look for ways to give back. Each day I’m alive, I remind myself to thank God. He’s my rock.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Living with any chronic disease uses up energy, energy best spent living and not managing the doctors, pharmacies, and all the medical issues you face. I learned early that no one has my best interest at heart except me. Convincing other medical personnel to be mindful of me as the reason they even have jobs takes time and patience.

Advocating for yourself? Here’s what I’ve learned. Keep track of doctor’s appointments and interactions with any medical entity in a separate notebook, with dates, times, names of anyone you speak with, key concerns, and results. Understand that this isn’t a battle with the people on the phone, it’s a battle to get the best outcome for you. The people on the phone are a resource. You want them on your side. Use their names. Be courteous. Ask questions. Be careful to listen and follow the steps they outline. Ask more questions. Use internet information directly if they ask for research and medical reasons. Never use convenience as a reason for any appeal.

Many times I’ve wondered why I bothered with that darned notebook, but the results have been worth it. I successfully appealed a denial of coverage for a medication beneficial to me and in another case, I was able to save hundreds of dollars in co-pay billing because I could track through that notebook the conversations I’d had over the span of a year. It may seem like a chore, but your well-being is worth it. If you are physically unable to keep a notebook, have your caregiver do it for you.

 

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PatientsLikeMe and M2Gen Announce Partnership and Plans for Landmark Cancer Experience Study

Posted March 8th, 2016 by

 

CAMBRIDGE, Mass. & TAMPA, Fla., March 8, 2016—Patient network PatientsLikeMe® and informatics solutions provider M2Gen® are collaborating to give patients and researchers a more complete picture of patients’ experiences with cancer treatments and to shed new light on the factors that may affect outcomes and quality of life.

The partnership aims to advance cancer research by combining real-world, patient-reported outcomes shared by members of PatientsLikeMe with the molecular and clinical data shared by patients enrolled in the Total Cancer Care® program at Moffitt Cancer Center and The Ohio State University Comprehensive Cancer Center –

Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James). The combined dataset will give researchers a broader, longitudinal view of the many factors that affect patient outcomes.

The collaboration’s initial study is expected to kick off within the next several months and to focus on lung cancer. Researchers will analyze and explore the typically distinct forms of data to generate new insights into the patient experience and value of treatment plans for those undergoing care. The study is funded by PatientsLikeMe partners AstraZeneca and Genentech, a member of the Roche Group.

“As we continue to expand our real-world measurement system, we want to ensure we’re giving patients access to all of the information needed to help guide their care decisions,“ said PatientsLikeMe CEO Martin Coulter. “By integrating data from multiple sources, we’ll be able to get, and give, a more comprehensive picture of disease and patients’ experience managing it.”

Moffitt Cancer Center and OSUCCC – James are founding members in the Oncology Research Information Exchange Network (ORIEN), a unique research partnership among the country’s top cancer centers. M2Gen guides ORIEN’s operations and strategy. Dr. William (Bill) S. Dalton, Founder and CEO of M2Gen, said the collaboration will help guide how cancer care evolves.

“This partnership brings together everything we need to better understand the patient, identify unmet needs, and use that insight to develop better technology, treatments and care protocols,” said Dalton. “We ultimately hope it provides the tools and information patients and their doctors will use to make treatment decisions that are tuned to patients’ life goals and treatment preferences.”

About PatientsLikeMe
PatientsLikeMe 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About M2Gen
M2Gen is Moffitt Cancer Center’s wholly owned, for-profit, informatics solution subsidiary advancing personalized medicine by using high quality tissue, clinical data and molecular technology to accelerate the discovery and delivery of personalized medicine. Using a rapid learning approach, the goal of M2Gen is to accelerate the science of precision medicine by creating evidence and knowledge-based solutions that identify a patient’s susceptibility to disease, predict how the patient will respond to a particular drug, and match patients to the best therapies for an optimal treatment outcome. M2Gen, along with Moffitt and partnering community hospitals, has created a large, cancer-focused biorepository linked to clinical and molecular data. For more information visit www.m2gen.com

About the Oncology Research Information Exchange Network (ORIEN)
The Oncology Research Information Exchange Network (ORIEN) is a unique research partnership among North America’s top cancer centers that recognize collaboration and access to data are the keys to cancer discovery. Through ORIEN, founders Moffitt Cancer Center in Tampa and The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute in Columbus leverage multiple data sources and match patients to targeted treatments. More information is at http://www.oriencancer.org/.

About the Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute
The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute strives to create a cancer-free world by integrating scientific research with excellence in education and patient-centered care, a strategy that leads to better methods of prevention, detection and treatment. Ohio State is one of only 45 National Cancer Institute-designated Comprehensive Cancer Centers and one of only four centers funded by the NCI to conduct both phase I and phase II clinical trials on novel anticancer drugs. As the cancer program’s 306-bed adult patient-care component, The James is one of the top cancer hospitals in the nation as ranked by U.S. News & World Report and has achieved Magnet designation, the highest honor an organization can receive for quality patient care and professional nursing practice. At 21 floors with more than 1.1 million square feet, The James is a transformational facility that fosters collaboration and integration of cancer research and clinical cancer care. For more information, visit www.cancer.osu.edu.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com
781.492.1039


“My data is going to empower the next patient” — PatientsLikeMe member Letitia shares her mission to #PayItForward

Posted March 4th, 2016 by

Many of you have already met Letitia, an active member of the epilepsy community and part of the 2014-2015 Team of Advisors. In her Patient Voice video, Letitia shares how her research on the site led her to the surgery that changed her life – she’s been seizure free for more than three years.

Now, Letitia has a new goal: to pay it forward by sharing her insights with other epilepsy patients and helping them advocate for themselves. Check out her new video below to see how she’s guided an 11-year-old girl through the same surgery she had.

“It makes me feel like my journey with epilepsy was for a reason … if I didn’t go through this I wouldn’t have the knowledge I have now to help patients to be informed and to advocate for themselves, and get the help that they need.”


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What’s one piece of advice you can offer to #PayItForward and help another patient like you? Share it in the forum!

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