Watch the video, “Experience of pain and fatigue in adult idiopathic inflammatory myopathies (IIM)” with Helene Alexanderson, Ph.D. with information about how to adapt physical activity and exercise in relation to pain and fatigue.
In this video, Patrick Schmidt of FFF Enterprises and Michelle Vogel of CSI Pharmacy join MSU to explain the IG shortage. More importantly, if you are a patient affected by the shortage, this video provides the information you need to self-advocate and get your IG therapy.
Michelle Vogel of CSI Pharmacy, a sponsor of MSU and MyositisLIFE.org, provides information about the national Ig shortage. These details help to clarify a lot of misinformation that has been circulating.
Mary Jane’s passion for welcoming and educating was well-known throughout the myositis community. That’s why we can think of no better way to honor and remember her than to establish this memorial fund to help IBM patients and caregivers attend the TMA Annual Patient Conference in her name.
Plasma Services Group (PSG) joined us for a live video discussion about donating plasma for medical research. You could earn up to $200 per donation of plasma. This is used for medical research and in the making of diagnostic test kits.
CSI Pharmacy joined us for a live video education session about IG therapy, both IVIG and SCIG. Health insurance discussion is helpful in knowing how to get IG approved and customize treatment for you.
A session that covered safety and effects of exercise in recent onset and established adult and juvenile IIM. Dr. Alexanderson explained some mechanisms for muscle weakness and discussed anti-inflammatory effects of exercise as well as health-enhancing physical activity.
Yoga and meditation offer a wealth of opportunities to seniors and caregivers. While both practices might appear complex on the surface, they are beginner-friendly, regardless of age or ability. Read on for how to get started and the many ways these activities can improve your quality of life. Ancient practices with modern day perks Both meditation and yoga are time-tested […]
The success of the Registry effort depends on the cooperative efforts of IBM patients around the world. The IBM Registry team invites and encourages all persons with IBM to join the Registry and to contribute to scientific and medical progress in answering the question that Dr. Shubik asked in 2003, “What can I expect from this disease?”
Watch the RDMD recording of the live video session we did in early 2019 to learn more about the RDMD Inclusion Body Myositis (IBM) Program details, how to join, and what you can expect. MSU was the first nonprofit patient advocacy group to collaborate with RDMD realizing its potential.
The ongoing Arimoclomol Clinical Trial for sIBM continues to generate a lot of questions from our community. As part of our commitment to providing the latest information on research and clinical trials, we asked Dr. Mazen Dimachkie, Principal Investigator for the Phase II/III Arimoclomol Studies and Professor of Neurology and Director of the Neuromuscular Division at University of Kansas Medical Center, if he would provide us with an update.
This paper assesses the performance of EULAR/ACR classification criteria in a cohort of IIM cases and examines how subtypes of IIM identified by the criteria compares to expert opinion. Based on the results, the EULAR/ACR criteria were highly accurate in identifying cases of IIM.
Watch “An Update on the Clinical Studies Using Arimoclomol as a Potential Treatment for sIBM” with Dr. Mazen Dimachkie, Principal Investigator for the Phase II/III Arimoclomol Studies and Professor of Neurology and Director of the Neuromuscular Division at University of Kansas Medical Center.
Learn about how clinical trials work in this educational and interactive video session led by Lindsey Wahlstrom-Edwards, Head of Partnerships with our partner, Antidote Technologies. View and download the slides as well.
Alyssa Smith wrote and sings a new song, “Save Me” and it will premiere on Feb. 28th, Rare Disease Day. “Save Me” is a song that most likely ‘sings to the tune’ of how we feel living with the rare, chronic autoimmune disease myositis. Premiers on Rare Disease Day!
Interstitial lung disease (ILD) is a well-recognized complication in the spectrum of diseases known as the idiopathic inflammatory myopathies (IIM). Individual studies of IIM-associated ILD have shown variation in the progression of the disease and, because of small sample sizes, prognostic factors seem to be difficult to identify. Prognostic factors are those characteristics or conditions that can be used to estimate or predict outcomes of disease.
Introducing the NEW Myositis Support Community! The Myositis Support Community is similar to Facebook, however, it provides a more safe and secure environment for the sensitive topics we discuss as people living with, and those caring for people with, myositis (idiopathic inflammatory myopathies).
We are excited to announce a new collaboration with RDMD, a company that aims to jumpstart research for patients with Inclusion Body Myositis. Learn more about RDMD and how you can get involved as a person living with IBM.
Join MSU in celebrating Rare Disease Day, Feb. 28th, and Rare Disease Week on Capitol Hill. We are also hosting a clinical trial education session in partnership with Antidote Technologies on Feb. 27th.
DETERMINE – a Phase 3 trial designed to evaluate the efficacy and safety of lenabasum for the treatment of adults with dermatomyositis, is now recruiting at The University of Pennsylvania. Additional locations will be announced over time so stay tuned.
Information on the differential diagnosis of adults with muscle weakness. Differential diagnosis is the process of distinguishing a specific disease from others with similar symptoms and features. The paper points out the irony that the most commonly used diagnostic criteria for
New locations announced July 9, 2019. DETERMINE is a double-blind, placebo-controlled 1-year study designed to test the efficacy and safety of lenabasum in approximately 150 adults with dermatomyositis (DM).
The research found that DM patients with the anti-transcriptional intermediary factor 1 (anti-TIF1) antibody were more than three times more likely to develop cancer than DM patients without the anti-TIF1 antibody.
The authors propose that a new classification system for Idiopathic Inflammatory Myopathies (IIM) based on phenotypic (observable characteristics), biologic and immunologic criteria is needed based on the results of their study. One of the difficulties associated with the diagnosis and treatment of IIMs is that they affect patients differently.
MSU is just getting started. You see, as long as there are still people dying from the various myositis diseases, we will be here to ensure patients and caregivers have a place to share experiences and knowledge and to get the education they deserve to effectively self-advocate and have informed conversations with their healthcare providers. We will be here to provide patients in need with financial assistance that will help them travel to see myositis specialists, help cover emergency household expenses, and mounting medical bills.
Clinical trials and studies require patient groups in clearly defined categories, but the multiple diagnostic and classification criteria used for IIM are problematic. This review offers more clear criteria.
The purpose of this article is to describe advancements in the diagnosis of Inclusion Body Myositis (IBM) and therapy for patients of IBM as presented in scientific publications since 2016. IBM is considered one of the idiopathic inflammatory myopathies (IIM), but is unique because it is resistant to treatment and therapy does not produce lasting benefits.
The information collected by ultrasound elastography (USE), such as structural changes of muscle, is thought to make it useful for following disease evolution as well as response to therapy suggesting USE could be a useful diagnostic tool to aid in the morphological evaluation of muscles.
Updated April 23, 2019 – Study is fully enrolled. One of our goals is to provide inclusion body myositis patients with access to research. MSU is excited to announce a new, mutually beneficial relationship with Orphazyme, the Danish biopharmaceutical company sponsoring the Arimoclomol Phase II/III clinical trial for sporadic inclusion body myositis.
In this study, the researchers set out to determine if there was a distinction between the type of autoantibodies present in dermatomyositis patients and the incidents of skin eruptions while taking hydroxychloroquine.
Amazon’s donate feature is a part of the various tools and programs MSU uses to make donating fast and easy. Some of the other easy ways include the MSU PayPal Giving Fund, Facebook Fundraising, text to donate, as well as other traditional ways like using a credit card and mailing a check.
Today, Corbus Pharmaceuticals announced that the European Commission has approved orphan designation for lenabasum in the treatment of dermatomyositis in the European Union (EU). Earlier this year, lenabasum was granted Orphan Drug Designation in the U.S. by the FDA.
Statins are drugs that lower cholesterol. There have been reports indicating that statin use may be associated with idiopathic inflammatory myopathies, but the authors claim this was the first study to statistically confirm it.
We would like to let you know about a clinical research study that is available for patients diagnosed with Inclusion Body Myositis (IBM). The Yale School of Medicine, Department of Neurology, is currently seeking volunteers for study participation.
MSU’s guest author, Dr. Daniel Chellete, analyzed recent studies concerning exercise with Myositis. Dr. Chellete is a doctor of physical therapy at Duke University Medical Center Physical Therapy Department. The department works closely with patients with neuromuscular diseases including those who are seen at the Muscular Dystrophy Clinic.
Corbus Pharmaceuticals announced today that they will proceed with a Phase 3 clinical trial to evaluate the efficacy and safety of lenabasum for the treatment of the rare disease dermatomyositis (DM) and plans to begin the international Phase 3 trial, a 1-year, double-blind, randomized, placebo-controlled study at the end of 2018.
“New Developments on the Role of Itch in Dermatomyositis”, based on new research published in the British Journal of Dermatology, by Dr. Victoria Werth. This is the recorded version of the live online video education session we hosted during Myositis Awareness Month on May 30, 2018.
Watch “Polymyositis: The evolution of this diagnosis in light of recent research” with Dr. Christopher-Stine, who also discusses immune-mediated necrotizing myopathy, (IMNM), autoantibodies, diagnostic criteria, and more.
Portable Genomics and Myositis Support and Understanding Association (MSU) have partnered to enable myositis patients to better collect, manage, and share important biometrics with caregivers, researchers, and the pharmaceutical industry by providing a smartphone app and monetization platform.
Corbus Pharmaceuticals will host Jerry Williams, the Founder and President of MSU, Heather Spadaccini, Jerry’s friend and part-time caregiver, and author, Emily A. Filmore, a Co-Founding Director and Current Board Advisor for MSU in Norwood, MA to share their personal myositis journeys with Corbus Pharma employees on May 29, 2018. This gathering will help employees at all levels better understand the many ways myositis affects lives.
MSU, in participation with Corbus Pharmaceuticals, Idera Pharmaceuticals, and Diplomat Specialty Infusion Group, as a part of Myositis Awareness Month will host a live streaming YouTube video event, “Myositis in Focus: A Day of Remembrance,” on Sunday, May 20, 2018, starting at 2 PM EDT.
Explaining myositis (Idiopathic Inflammatory Myopathy) and how it affects our lives is difficult. There isn’t a simple, clear-cut answer for us. Myositis affects each person differently including changing symptoms, abilities, therapies and side effects. Sometimes these changes even occur on the same day. We hope this information will help you explain myositis and its impact on your life.
PR: Myositis Support and Understanding Association, an all-volunteer, patient-centered 501(c)(3) nonprofit organization, commemorates National Myositis Awareness month with the 2018 theme, “Myositis In Focus.”
MSU, a patient-centered 501(c)(3) nonprofit organization, is proud to announce a partnership with Antidote Technologies, a digital health company that connects patients with research, to provide clinical research access and tools to their community. By providing a clinical trial search engine powered by Antidote on their website, MSU will help patients find their clinical trial match and accelerate much-needed research in myositis, a chronic inflammatory muscle condition with no known long-term treatments.
Living with, and trying to overcome, autoimmune diseases affect all the people we love. Those of us who have children see this play out every day. My 12-year-old administers my methotrexate shots, rubs my sore muscles when my husband is not at home, cooks meals when I am unable, and even helps me bathe and dress when I am too weak to do it alone.
We all face a tough battle living with rare, autoimmune diseases like myositis. Remember to Be Kind as we never know what one is dealing with on a particular day. This article really struck at the heart of what many of us living with myositis face. We suggest reading and sharing this article.
Dr. Victoria Werth, MD, presents, “Overview and new developments in Dermatomyositis.” This was a live Myositis Support and Understanding online educational session for Rare Disease Day 2018. We thank Corbus Pharmaceuticals for their help with Rare Disease Day planning.
Myositis Support and Understanding Association (MSU) has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face. Read full release that includes the MSU RDD events.
It has been a busy and productive year for MSU. We are sorry so many are still suffering from this rare disease, but there is hope as we are making great strides in helping to improve the lives of myositis patients through many avenues. Through the many existing and upcoming programs and services for myositis patients and caregivers, along with educational materials for physicians, nurses, physical and occupational therapists, legislators, and other healthcare decision-makers, and our efforts in assisting in research and clinical trials, 2018 is going to be an even better year. Read full article.
On December 14, 2017, Orphazyme A/S, University of Kansas Medical Center, and UCL announced that Orphazyme formally assumes the sponsorship of Phase II/III arimoclomol trial for the rare neuromuscular disease sporadic Inclusion Body Myositis (sIBM).
Learn more about the different types of Myositis Live Online Video Support, Education, and Activity Sessions we offer, how to join, and if interested, how to contact us to provide suggestions and lead a session yourself.
PRESS RELEASE: Myositis Support and Understanding (MSU) is once again a participant in #GivingTuesday, a global day of giving. Since its inception in 2012, #GivingTuesday has become a movement that celebrates and supports giving and philanthropy and brings people together around the values of service and giving back. Occurring this year on November 28th, #GivingTuesday is held annually on the Tuesday after Thanksgiving in the U.S. Following the widely recognized shopping events of Black Friday and Cyber Monday, #GivingTuesday kicks off the holiday giving season, inspiring people to improve their local communities and give back in impactful ways to the charities and causes they support.
Orphazyme A/S, a Danish biotech company with a late-stage orphan drug pipeline, today announced that the U.S. Food and Drug Administration, Office of Orphan Products Development, has granted an orphan drug designation to arimoclomol for the treatment of the orphan disease Inclusion Body Myositis.
Open Enrollment for the insurance marketplace for coverage starting 2018 begins on November 1st and ends December 15, 2017. This is a much shorter enrollment period from previous years. Don’t miss your chance to enroll or renew your insurance coverage. Medicare open enrollment information also included.
MSU is a 501(c)(3) non-profit organization founded on July 30, 2015, for patients living with, and for loved ones caring for someone with, Myositis, a rare and debilitating autoimmune disease. Myositis is a rare disease estimated to affect between only 50,000-75,000 people in the United States. In recognition of everything Myositis Caregivers provide, MSU is asking patients to “Celebrate their Caregivers” and share the experience through videos, photographs, and articles to be distributed on the Myositis Support and Understanding website and social networking sites.
Chronic Illness, Myositis, and Depression: The following are the comments I gave to a support group about my book, The Marvelous Transformation: Living Well with Autoimmune Disease and how one can use the messages within it to deal with the mild, acute, hopelessness, sadness, and even depression that sometimes results from flares of chronic illnesses like m
May is Myositis Awareness Month. Myositis Support and Understanding commemorates the month with patient-centered events. Our theme, “With Myositis, Sometimes Zebras Have Spots” refers to the multitude of ways patients lives are affected in every aspect by Inflammatory Myopathies. We hope our members, supporters, friends, and family members will get involved throughout the month of May to raise awareness and funds to help MSU continue moving forward.
Learn more about Rose’s experience on Capitol Hill during Rare Disease Week 2017. Find helpful links to Advocacy organizations including the RDLA. More about Advocacy, new and existing legislation, ways and tips about how you can effectively advocate right now for the rare disease Myositis. Your congressmen and women want to hear from you. Will you get involved?
As you probably know, we have lost many of our MSU group members throughout the past couple of years, either from the myositis itself or from complications and/or secondary infections, so it always hits home for many of us. I remember one particular span of a couple of weeks a few years ago when we seemed to hear of a new person’s death every few days. We try not to personalize other people’s passing to be “all about ourselves” and of course, as we grieve for our friends and their families we can’t help but ask, “will that be me someday?” I’ve come to accept that this is natural and in no way disrespectful to the deceased…especially if it motivates me to take even better care of my body. I mean, how could I better honor the memory of a friend?
Although everyday life seems like a mad dash to the finish line honestly it’s all about staying the course and that is often easier said than done, especially for those who suffer from Myositis. Life stops for no one when you are living and it doesn’t slow down nor does anyone award free passes when you’re diagnosed with a disability disease. You are still responsible for bills, groceries, providing for and caring for your families; if you are a single parent, it’s like double the work. We must still stay the course even when the odds are stacked against us.
Investigators are seeking people with dermatomyositis to participate in a phase 2 clinical trial of the experimental drug IMO-8400. The goals of the trial are to evaluate whether IMO-8400 can be given safely and if it can improve DM-related skin lesions and muscle weakness. The biopharmaceutical company Idera Pharmaceuticals is the clinical trial sponsor.
February is the month of love. Chocolate-covered strawberries, roses, sensual massage oils, lingerie, and champagne — we see reminders of romance and, yes, sex everywhere. When you are dealing with the effects of chronic illness — pain, physical limitations, and fatigue which are not in your control — they can impair your sex-life. Unfortunately, during the Valentine’s season, for people whose ability to have sex has become difficult, the simple objects associated with romance can produce guilt, shame, and sadness. People who struggle with their health may report feelings of inadequacy, fear of their partners leaving them, and feelings that their lives have become all about their illness. Even in the absence of sex, partners spending a little bit of extra time paying mutual attention to their relationship can be very rewarding.
Prednisone Withdrawal: As a patient with #myositis, you are likely on, or have been on, prednisone at some point. Prednisone is a man-made substance that reduces inflammation quickly and that is why it is used as a first-line treatment in most forms of myositis. But what happens when it is time to taper? GO SLOW!
Mums journey was a very difficult one. I remember her first fall the day I gave birth to my daughter 21/12/2005 and her final day her body could take no more was 28/6/2016. Following her first fall mum noticed she was falling more and more often, she saw GP’s for years when the muscle wasting and swallowing problems began to show. No answers, then to September 2012, mum became seriously ill, a flu-like bug led to dangerously low sodium levels and pneumonia. She was delusional and eventually began fitting so was put in an induced coma.
We hope that your involvement with Myositis Support and Understanding (MSU) has allowed you to feel more included and has provided you with a platform for you to interact with people who share your concerns and frustrations because they, too, experience them. We sincerely hope that we have helped you feel more understood, valued, and joyful.
It has been over 13 years since Jerry Williams, president of MSU, was diagnosed with Polymyositis, sometimes simply referred to as Myositis. It took 2 1/2 years for him to obtain a true diagnosis due to the rarity of myositis, but was misdiagnosed with many other disorders in the meantime. What happened due to the misdiagnosis? Learn more by reading the full article and get involved.
I think we often neglect to hear what our children and younger family members think about us living with such a rare and complicated disease. It must be confusing for them at times when one day we are able to walk and the next we cannot.
Myositis Support and Understanding is hosting a fundraiser and requesting volunteers for #GivingTuesday, a global giving movement that has been driven by individuals, families, organizations, businesses, and communities in all 50 states and in countries around the world. Since its founding in 2012, millions of people have come together to support and champion the causes they believe in and the communities in which they live.
This year MSU is asking for donations of any amount to help continue moving forward as a relatively new nonprofit organization. We require continued funding in order to serve our members with financial assistance, program development, and continued operations. With Myositis being a rare disease, funding can be difficult outside of our membership. There are several ways you can make a contribution to help MSU. Visit SupportMyositis.org/donate to learn more and visit our Facebook Fundraiser, https://www.facebook.com/donate/10154698595627210/, and share with others.
When visiting a new doctor, patients are usually supplied with a number of information packets that are to be filled out. Some, if not most of these, require signatures to allow the doctor to treat you. This is where it becomes tricky. The information packets can say anything, from your co-pay charges to allowing the doctor to treat you however he or she sees fit. It is extremely important to read these packets in detail so that you can understand everything that you are agreeing to. If you don’t agree with something, you don’t have to sign it. You can discuss your trepidations with the office staff and/or the doctor to see what can be done. Signing something you haven’t fully understood can be hazardous later if you feel you have been wronged. Once those documents are signed, you have agreed to everything that is stated.
Learn more about Lynn Lizarraga and her online video laughter yoga program she provides to members of Myositis Support and Understanding at no charge. “Jingle Bells, Myositis smells, symptoms go away, It’s no fun to work so hard to sing or laugh or play…”
My bad parody to “Jingle Bells” describes how I felt shortly after my diagnosis of IBM in 2003. I knew I had to shake off those feelings and meet my new challenges, so I began searching for ways to keep busy and make myself happier and healthier.
Daily activities had started to become a struggle, I could no longer bend my fingers into chords on the piano, and visits with my grandchildren were hampered by my lack of mobility and ability to participate in their games. So what could I do to feel fulfilled and buoyant about my life again?
Lincoln, DE – July 14, 2016 – Myositis Support and Understanding Association, Inc. (MSU) launches its long-awaited Myositis Patient Financial Assistance Program in celebration of its one-year anniversary as a non-profit. MSU, a 501(c)(3) non-profit organization founded on July 30, 2015 for patients dealing with Myositis, a rare and debilitating neuromuscular disease, affecting an estimated 50,000-75,000 people in the United States. This […]
One of the reasons that Myositis fails to receive a lot of attention and respect is that it isn’t considered a terminal disease and rarely, if ever, is indicated as the cause of death. However, conditions resulting from Myositis are typically listed as the cause of death: lung, heart, liver and kidney disease or failure to thrive due to inability […]
There are many challenges faced by patients living with a rare, chronic illness like Myositis. These can include: medication side-effects, numerous doctor appointments, transportation issues, disease symptoms, and endless testing. These things can cause financial hardships, stress, anxiety, depression, and the possibility of affecting relationships. The challenges faced by patients and caregivers become opportunities for MSU, a nonprofit organization dedicated to improving the lives of Myositis patients, to find ways to help in order for no one to feel like they are alone in their struggles.
Lincoln, DE – May 1, 2016 – What is your #MyositisLIFE? May is Myositis Awareness Month. Myositis Support and Understanding Association (MSU) believes in Knowledge in Action! We want to show the world that Myositis patients have many different faces and lives. We are not defined by Myositis; it is just something we have. We are doctors, lawyers, accountants, teachers, nurses, artists, […]
A recurring topic of conversation in health support groups is the difficulty spouses, partners, parents, siblings, children, or friends of people with chronic illness show in understanding and accepting the realities of their loved ones’ health situations. This is often compounded for people with the so-called invisible diseases such as myositis, fibromyalgia, MS, chronic migraines, and other autoimmune diseases because no matter how bad patients feel on the inside, no matter how weak their muscles, no matter how much fatigue they struggle with, they often look normal to the outside world.
At MSU, our passion translates into action As promised, the brand new Myositis Support and Understanding Association website is now live! The new easy-to-navigate, easy-to-read website has undergone a full overhaul adding invaluable information, resources, features, support options, and information about our programs and services. As a result of the organization’s constant interaction with Myositis patients and caregivers, MSU has […]
You are rare! Yes, you, living with Polymyositis, Dermatomyositis, Inclusion Body Myositis, and Juvenile Myositis. Our caregivers, you, too, are rare. And today, Rare Disease Day (RDD) 2016, is all about you! We are Rare but we Roar!
Today is a day to celebrate you and your struggles, victories, and your Voice. It is a day to take notice of what is needed for rare disease patients, and caregivers alike. We must “Make the Voice of Rare Disease Patients Heard,” the RDD slogan this year. Only through our collective voices will change happen.
With the 2016 Rare Disease Day theme of Patient Voice, remember that we provide you a voice in everything we do and with every step we take. We are committed to helping support, educate, and assist you in ways that will help you to raise your voice and take better care of yourself.
Myositis Support and Understanding Association announces its new Video Chat Support Program Lincoln, DE — February 26, 2016 — With Myositis patients spanning across the globe, Myositis Support and Understanding Association is excited to bring their new Video Chat Program to light. MSU created this new venture in an effort to expand its online support programs while bringing patients together […]
Myositis Support and Understanding Joins Rare Disease Day® and the Global Movement to Raise Important Awareness for Rare Diseases Lincoln, DE—February 22, 2016 — For the third year in a row, Myositis Support and Understanding Association (MSU) has joined forces with rare disease patients and health care advocates in the United States and around the world fo
Fortunately, a lot of discussion is going around about Step Therapy, first brought to our attention by the American Autoimmune Related Diseases Association (AARDA). The discussion has become so prevalent that many, including the U.S. Pain Foundation, are declaring February as “Fail First February.” What is step therapy and how does it impact the life of a patient? Those living […]
Myositis Support and Understanding recently spoke with Rich and Carla Stevenson, David Quay, and Barry Pace about life with Inclusion Body Myositis (IBM) and how it affects toileting needs and the solution they found which is safe, affordable, and allows for more in-home independence; LiftSeat®
For a nonprofit organization that is only a few months old, Myositis Support and Understanding has had an amazing year! We have made wonderful friendships and have built upon our membership, our Board of Directors, our Group Administrators, and our Volunteers. We are blessed to have a team of compassionate, knowledgeable, and ready-to-work individuals who are passionate about our Mission […]
One of the worst things someone with chronic illness can do is make a mistake in the balance between keeping a social life and over-extending themselves. Misjudging their energy and strength can lead to more relapses of symptoms, or worse. Here are some helpful hints for how friends of people with chronic illness can assist in maintaining friendships, while still doing things that will be enjoyable for all people involved!
Disability and Invisible Illness An Interview with Attorney, Anthony Castelli SSA disability and invisible illness. An interview by Celeste Cooper with disability and personal injury attorney, Anthony Castelli. This video explains the various methods of applying, appealing, and using an attorney to file for SSDI and SSI. Social Security Disability can be a nightmare of a process but when you […]
My disease is worse than your disease Why comparing our struggles damages us all In conscious living, people work to move away from society’s penchant for competition and towards a more collaborative paradigm. One envisions the world as a place with enough necessities for all and all people being equal…in this model one tends to stop comparing, and striving to […]
Myositis Awareness Day 2015 video is a story in photos and music that shows the support that MSU fosters each and every day in our support groups, our website, and on social networking. You are never alone in your battle with Myositis. Day-by-Day is the Myositis Way!
When your Spouse or Partner is your Caregiver I have been with my husband for almost 10 years. He has been by my side every step of the way through this difficult journey. We’ve had our ups and down, and even were blessed with a beautiful baby girl. I asked my husband some questions about being my caregiver, and here […]
Educating with ACTION: More Than Just a Day of Awareness It is fitting that Myositis Awareness Day falls right in the middle of Pain Awareness Month. Pain is a large part of living with Myositis. Educating our peers on these topics, and all of the symptoms that come along with Myositis, is important throughout our day-to-day lives. Creating awareness is […]
Awareness: Then What? by Sandy Block In the advertising world, name recognition means everything. Product names have been so ingrained in our minds that some brand names are used to refer to generic products such as Kleenex and Xerox. Political campaigns deluge us with candidate names using radio, TV, signs, personal handshakes, and baby kissing. Name awareness is essential to […]
It was an exciting day in the State of Delaware Tuesday, September 2nd. I had the honor to meet with the Governor of Delaware, Jack Markell, to receive a proclamation declaring September 2015 as Myositis Awareness MONTH in Delaware! National Myositis Awareness Day, observed September 21st each year, was created through a U.S. House resolution in 2006.
When you have Myositis, or other Autoimmune Diseases, you could be more susceptible to those pesky little viruses and bacteria that hitch a ride home on your child. Unfortunately, as many of us are immunosuppressed, a mild infection for others can be a big deal to us, both in fighting the infection and in the repercussions that can occur when our immune systems turn on.
Severe Vitamin D deficiency is an epidemic affecting up to 85% of Americans, putting them at risk for cancers, heart disease, osteoporosis, and chronic pain. Vitamin D deficiency may cause a bone disease called osteomalacia and can be a precursor to osteoporosis. Osteomalacia is similar to rickets, as it softens the bones. When you add this with long-term Prednisone use […]
NONPROFIT NEWS: Five years ago Jerry Williams founded “Polymyowhat: Understanding Myositis” as a Facebook group and blog. At the time, he had a vision to start a nonprofit that would directly benefit the Myositis Community while working with other existing nonprofits. “Polymyowhat” became Myositis Support and Understanding in early 2014. After much planning, organizing, hard work and patience, we are […]
One of the most common topics of concern for the women in our support groups involves pregnancy. People want to know the effects of Myositis on pregnancy, if Myositis affects a patient’s ability to conceive and what effects pregnancy has on Myositis. For this Tip Tuesday we want to reassure you that, yes, women with Myositis do indeed successfully conceive […]
Today Jerry Williams, founder and president of MSU, is interviewing our very own, Emily Filmore. She is an MSU Board member, serving as Secretary, and her book, “The Marvelous Transformation: Living Well with Autoimmune Disease” has just been published. We believe her book is going to be instrumental in changing the face of chronic illness, especially that of Myositis […]
Service Animals to Assist with Disabilities Because Myositis causes muscle loss and limits mobility, a service animal to assist with everyday tasks may be a consideration. When exploring the possibility of getting a service animal, you may find what regulations may apply. In the U.S., this was most recently defined on March 15, 2011 as part of the Americans with […]
Myositis Overlap Diseases: Scleroderma June is Scleroderma Awareness Month and an opportunity to highlight another frequently-seen overlap with Myositis. The word “scleroderma” means “hard skin” and is believed to be caused by an overproduction of collagen. Like most forms of Myositis, it is considered a chronic autoimmune disease primarily affecting the connective tissue, which is tissue that […]
What you should know about MDA Polymyositis, Dermatomyositis and Inclusion Body Myositis are classified as neuromuscular diseases. In the US these diseases fall under the Muscular Dystrophy Association (MDA), a nonprofit organization which advocates for people with neuromuscular diseases including research, drug development, and clinical trials. MDA financially supports 200 medical institutions in the US to host MDA clinics. The […]
Erasing or embracing your life? If you could give up your disease, would you? The answer seems obvious doesn’t it? “Of course I would,” you may be thinking, but I’m not so sure, myself. We were with some friends tonight, joking about taking a time machine back to 1995, before I got sick, and stopping it from happening. (I could […]
Clinical trials for Myositis and other rare diseases is an essential step to finding safe and effective treatments. There are currently no approved treatments specifically for myositis. We provided resources to find clinical trials for myositis patients.
Myositis Overlap Diseases: Sjögren’s Syndrome Some common autoimmune diseases that “overlap” with myositis may include rheumatoid arthritis, lupus, scleroderma and Sjögren’s and Raynaud’s syndrome. When you have myositis and another autoimmune disease, you are considered to have an overlap syndrome. Sjögren’s (SHOW-grins) syndrome is primarily characterized by eye and mouth symptoms caused by an abnormal composition and/or impaired production of tear […]
Treatments for Myositis can cause serious bone loss Many people think Osteoporosis is a disease found only in older women, which often causes bent posture with a prominent back hump. No matter what your age, the use of steroids such as Prednisone significantly increases the risk of bone loss, and it is as disabling as it is disfiguring. Dosages as […]
Are we just doomed to feel sad, helpless, alone, angry, frustrated, doubted, betrayed, futile, disgusted, and afraid? NO. While it is a fact that many Myositis patients experience depression as a result of the life changes, the physical limitations, and the emotional strain of being sick, it doesn’t mean you have to face a life sentence of being sad.
Share your story
We want to read your story about living with or caring for someone with Myositis. Sharing your story will not only help advance awareness of Myositis, it will also help others understand how this rare disease affects each of us differently.
Simply use the form below to submit your story and photo to us. Once approved, we will add it to our website and share with our social networks. By submitting your story and photo to us, you are giving us permission to share these publicly.
Go to any doctor with myositis experience and you will hear about distinctions of weakness based on muscle groups. Other health practitioners may even use different terms which make it more confusing. Our Tip Tuesday gives you a little cheat sheet to understand what they might mean.
Natural, Complementary Health Options: Part 1 By Emily A. Filmore As Myositis patients encounter negative side effects or lack of results from pharmaceuticals, they often look for other options. Thanks to the increase of information and evidence about alternative and complementary options, many Myositis patients are turning to nutritional supplements, essential oils and other therapies for additional support […]
Cover your skin As the Western Hemisphere turns from winter to spring, we are reminded of the need to protect ourselves from the sun. (Actually, sun protection should be a part of our routines year round, but even more so as the sun intensifies). Many of us, who are on steroids, immune-suppressing or modulating drugs, are rendered highly sensitive to […]
Join MSU in celebrating Rare Disease Day 2015 Myositis Support and Understanding (MSU) has the honor of joining The National Organization for Rare Disorders (NORD), Rare Diseases Europe (EURORDIS) and many other organizations from across the globe in expanding knowledge about rare diseases through the Eighth Annual International Rare Disease Day (RDD 2015). The theme for 2015: Living with a […]
Care partners, share your rare disease story In observance of the upcoming Rare Disease Day 2015 theme, “Living with a Rare Disease,” we want to know what it’s like for you, as a care partner, to deal with the various complexities surrounding a rare disease diagnosis. Often with rare diseases, we find the need to search outside of our usual […]
Did you know there are doctors who have combined training in both Dermatology and Rheumatology? These physicians are referred to as Rheum-Derm’s. This subspecialty, Rheumatologic Dermatology, focuses on the diagnosis and treatment of the skin manifestations of rheumatologic diseases like Dermatomyositis and other cutaneous rheumatologic diseases.
Depression: Ways to find help Author: Amber O’Connor & Sandy Block There is a lot of loss and grief involved in the process of having Myositis, which involves acknowledging, dealing with, and accepting one’s limitations and challenges. The following thoughts and suggestions about dealing with depression — a frequent occurrence with chronic illness — were provided by Amber O’Connor. Depression […]
Maintaining copies of your medical tests and procedures plays a vital role in taking charge of your own healthcare and being your own advocate. Do you know that, by law, you are entitled to have copies of your medical records? Do you keep copies of tests for your own knowledge and review and to show your other physicians? There are a variety […]
by Emily A. Filmore How many times have you found that you were viewing yourself as, predominantly, a person with a disease? Have you ever forgotten that you are a multi-faceted human being with talents, interests, desires, and abilities? How can we prevent ourselves from losing our identities when it seems our lives revolve around doctor appointments, pharmacy trips, limitations, […]
Myositis, a rare, autoimmune muscle disease may cause temporary or even permanent disability leading to the need to file for Social Security Disability Insurance (SSDI). But, what if you have never worked? What if you have not worked in a such a time that you are not eligible for SSDI? This is where SSI (Supplemental Security Income) comes in to help.
Tuesday, December 2, 2014, is the day for charitable organizations, families, businesses, communities, students, churches, clubs and individuals worldwide to come together for a common purpose: to give and to celebrate generosity by making and an impact on communities and nonprofits and then to publicize what was done by using social media and other platforms.
Myositis Support and Understanding supports Caregivers and offers a Facebook support group for Family and Friends at: Facebook.com/groups/myositisfamilyandfriends. This group offers a great opportunity for Caregivers to share ideas, understanding, and emotional support.
Confessions of a Myositis Mom by Emily A. Filmore If you are a parent with Myositis you might recognize bits of your own story in the following. I spend at least an hour per day, five days a week at the Ice Rink watching my daughter skate. She and her coach have plans, of which my husband and I are […]
A Prayer for the Caregiver By Bruce McIntyre Unknown and often unnoticed, you are a hero nonetheless. For your love, sacrificial, is God at his best. You walk by faith in the darkness of the great unknown, And your courage, even in weakness, gives life to your beloved. You hold shaking hands and provide ultimate care. Your presence, the knowing, […]
Steroid-Induced Diabetes With Halloween soon approaching, just going into a store can be risky because of the Halloween candy displays. And who doesn’t love candy? Especially those of us who manage #Myositis with corticosteroids such as Prednisone, because steroids often stimulate the appetite and make sweets especially appealing. It can be difficult for anyone to avoid these temptations, but just […]
“Our visually-oriented society may not take the time to look beyond appearances. People tend to believe what they see; and if it can’t be seen, it simply doesn’t exist.” Lisa Lorden, Fibromyalgia How many times have you heard comments such as: “You don’t look sick” “You’re not trying hard enough ” “Are you still sick?” “You should exercise” “You look so […]
There are two major reasons for you, as a caregiver, to receive the flu vaccination: To protect yourself so you can continue to be an effective caregiver. To protect the person you care for whose immune system may have a difficult time fighting the flu. According to the Centers for Disease Control (CDC), this year’s flu vaccine is about 62% […]
IVIG (Intravenous Immune Globulin) is a well-accepted treatment for Myositis and other diseases of the immune system. Plasma is a component of blood extracted from approximately 1,000 healthy donors which is used to make IVIG. Patients with autoimmune diseases, or other conditions where the body’s immune system is not functioning properly, can be helped by IVIG because it appears to […]
Life these days can be very hectic with the stress of work, family, finances and health concerns. Add in the responsibility of caring for someone with a chronic disease such as #Myositis to that list, and your anxiety level can go through the roof. While it’s common to feel that you are too busy to simply stop and smell the […]
It is recommended that you receive your flu vaccine as soon as it is available, typically early October. It takes about two weeks after vaccination for antibodies to develop in the body and provide protection against influenza virus infection. In the meantime, you are still at risk of getting the flu.
Do you care for someone with Myositis? A spouse, parent, child or friend? Myositis is a lifelong battle full of ups and downs; often with stretches of good health which can be cut short by flare-ups (also known as “flares”) of the disease. The uncertainty of the disease can affect your life just as much as it does the life […]
Sometimes, caregivers or care partners may overlook the importance of touching the person receiving care. According to research, the need for touch increases with age, illness and/or the amount of isolation experienced. Recently a patient remembered his experience of being comforted by the power of touch. Having been placed in a medically- induced coma, he awoke to find himself on […]
Understanding Myositis, a part of Myositis Support and Understanding (MSU), and its related Facebook support groups and social media networks would like to enlist your help in raising Myositis awareness as part of the 2014 National Myositis Awareness Day activities. Now through Sunday, September 21, we will be posting new announcements or challenges which we believe will help create awareness […]
When you are sidelined with Myositis or are a caregiver for someone with the disease, how often do we hear family and friends say “what can I do to help,” or “let me know if I can help,” and these statements come from a genuine desire to support you. Often, though, they don’t know how to go about providing assistance, […]
One of many potential complications of Myositis, including those with dermatomyositis, polymyositis and inclusion body myositis, is dysphagia, or trouble swallowing. Myositis can cause the throat muscles to weaken thus making meal times difficult and sometimes dangerous. As caregivers, we should be aware of what dysphagia is, learn about available treatments and procedures, as well as learn some tips that […]
Autoimmune diseases such as polymyositis, dermatomyositis and inclusion body myositis may lead to the loss of a job or the need to file for disability due to the severity of our illness. No longer being able to work can be devastating and leave us with a ton of time on our hands without money to incorporate fun activities into our […]
“Be” A Poem For today’s Caregiver Monday, we want to share with you a poem by a patient with Myositis. It has such inspiration when this illness can bring us down. For caregivers, this is what you do for us! “Be” (poem by w/J/L) Be the one that makes someone smile even if it is just for a little while. […]
Jerry Williams, Founder and President of Myositis Support and Understanding, and his partner Charlie take the ALS Ice bucket challenge.The MDA is one of our largest supporters as Myositis is covered under the muscular dystrophy umbrella of diseases.
Respite care offers myositis caregivers a temporary rest while your loved one receives care through other means. In-home respite care can be provided by a friend, family member or by using a paid or volunteer service. There are also care facilities, such as hospice centers (hospice services are not only for end-of-life caring), nursing homes and adult day care facilities. […]
We have all done it; gone to the web and Googled “Myositis.” We get pages of search results; however, when we read the material it may conflict with previous articles or have completely different information. So, how can we determine which site has reliable information? Know your source. Information from the Myositis Association and the Muscular Dystrophy Association is going […]
According to a study by Yale University, one-third of caregivers are clinically depressed. You, as a caregiver, are at high risk of depression because you sacrifice your needs to help others, in addition to the stress and life changes you experience as a result. For myositis and chronic illness caregivers, your lives have changed. Just as the person you are […]
Many doctors who specialize in myositis suggest an initial dosage of prednisone which is based upon your weight in kilograms. The suggested amount is 1mg per kilogram of weight. To find out how much you weigh in kilograms, multiply your weight in pounds by .453.
Are you a caregiver for a myositis patient? You are not alone. Caregiver support groups provide a safe place to express your emotions, share experiences, advice, and ideas as well as to collaborate with others to get the caring you, too, deserve.
Kilograms (kg) are now and have been, the unit of measurement used in the US for determining our weight for oral and infusion medication dosages. The formula to convert pounds to kilograms is simple; multiply your weight in pounds by .453 (i.e. 150lb X .453 = 68kg Note: there may be small rounding errors as the true number to multiple by extends eight decimal places being .45359237)
Caregivers and Loved Ones, Time to Play! Play theorist Brian Sutton-Smith shares his observation: “The opposite of play is not work, it is depression.” We can all benefit from some type of playful activities, as a family or one-on-one with your loved one for whom you are providing caregiving services. One definition of play is, “a state of being that […]
Do you experience headaches during or after IVIG infusions? Some people experience agonizing and long-lasting headaches from IVIG infusions. Benadryl is often given as a premed by the infusion center or taken by the patient prior to the infusion, however Benadryl, an over-the-counter antihistamine, is not effective for everyone. If you still suffer from headaches, consider asking your physician to […]
Financial Aspects of Caregiving When you are a full time caregiver to a spouse or partner who is on disability and you are unable to work yourself, the financial stress can be overwhelming. You may have gone from having two incomes to only having a disability income which can barely cover the bills. The attached blog article titled “The Noose” […]
Myositis can cause chronic pain! It has been reported that 40% of those with myositis are living with chronic pain. Many will require opioids to help control the pain. Unfortunately, opiods have many side-effects. Constipation is a common side-effect. Opioid-induced constipation can be absolutely miserable. The pain it causes, the bloating as well as a general “unwell’ feeling can make […]
Communication can be one of the hardest things between a caregiver and patient and may lead to arguments, hurt feelings and guilt. There are traditional ways of communicating such as asking questions, but there are also some communication tools that we may have overlooked. Touch: Whether hugs, kisses, hand-holding or massage, touch can be very important in communicating your caring […]
Myositis can cause the throat muscles, and all muscles involved in swallowing, to weaken, thus making meal times difficult and sometimes dangerous. Dysphagia can lead to choking and even aspiration pneumonia. Learn tips that can help.
Watch the presentation and learn more about defining what “family” is in caregiving and some wonderful insights about caregiving techniques. You will also find statistics, learn more about “new” family dynamics such as LGBT families and more. What has helped Caregivers? Information and Support Groups Respite Services Skill building interventions Help of secondary caregivers Assistance navigating health care system Assistance […]
“The Caregiver Community Action Network (CCAN) is a unique and highly dedicated group of over 100 volunteers in more than 40 states. Our CCAN volunteers reach out to family caregivers to provide education and support. They also teach caregivers to be advocates for themselves and their loved ones. “ You can join for free and get some much needed support! […]
Juvenile Myositis (JM or JDM for Juvenile Dermatomyositis) is a rare autoimmune disease that affects about 5,000 children in the United States and causes a variety of debilitating symptoms including muscle weakness and pain, severe fatigue, rashes, digestive difficulties, lung and heart problems, vasculitic ulcers, calcinosis and lipodystrophy. Currently there is no cure, but some symptoms can be alleviated with […]
As a caregiver for someone with myositis, you have one of the hardest, most stressful jobs imaginable. Caring for someone with muscle weakness, chronic pain, fatigue and other relentless symptoms is taxing, both physically and emotionally. Some of you may even care for someone who is now unable to do anything for themselves due to complete muscle function loss. In […]
Benefits of free membership to the Muscular Dystrophy Association include subscription to Quest Magazine, patient & caregiver support, equipment loan and repair assistance, educational resources, publications, guides to information about disability rights and benefits, employment, independent living, publicly-funded medical benefits, state resources, transportation and travel, webinars, and advocacy. To find more information about services offered by MDA: http://mda.org/services
Myositis, a muscle disease, falls under the Muscular Dystrophy Association. Myo = muscle, itis = inflammation. MDA clinics are often operated by large teaching universities and with using a multi-disciplinary approach, which means a patient can be seen by healthcare specialists from a variety of disciplines in a single location and who will collaborate with your other physicians. Specialists can […]
Why is it advised to notify one’s dentist of daily prednisone use of 20 mgs or more for at least two weeks? Any dental procedure that increases the level of physical or emotional stress can challenge the adrenal gland to produce more cortisol in order to combat that stress. Steroids suppress the body’s ability to produce cortisol thus increasing the […]
Jotting down a few notes a day can be an invaluable resource for you and your doctors by providing a timeline of your condition in relation to medications and other factors. It can be used as a more accurate tool to measure progress and a way for you to notice the subtle changes that you don’t always remember.
Many or most patients with Myositis take Prednisone to reduce muscle inflammation. “Steroid withdrawal syndrome” or “rebound effect” is a potential complication when tapering off long term use of Prednisone. The body has an exaggerated response that can result in fever, muscle pain, joint pain – making it difficult for the patient and the doctor to distinguish between an actual flare of the disease and withdrawal symptoms sometimes leading to an unnecessary increase in Prednisone.
Prednisone, Treatment for Myositis Prednisone, a corticosteroid, is usually the first line of treatment for Myositis. Other medications that help reduce inflammation and suppress the immune system are usually added while decreasing prednisone. Prednisone is usually a fast acting treatment that we call a “wonder drug” but has many side-effects. Short term effects: weight gain, increased appetite, mood swings, insomnia, […]
Methotrexate is a chemotherapy drug used to treat myositis. It comes in an oral pill form as well as a subcutaneous injection. It may take up to 12 weeks (or longer for some) for Methotrexate to take full effect. This drug works by suppressing the immune system, thereby preventing it from being self-reactive. Methotrexate has many side effects including, drowsiness, […]
Creatine phosphokinase (CPK) is an enzyme found in the heart, brain, and skeletal muscle. Muscle cells make this enzyme in order to function, when muscle cells are injured or unhealthy, these enzymes leak out of muscle cells and into the blood stream. Myositis damages muscle tissue, so in many cases raised CPK levels aid in the diagnosis of myositis. CPK […]
Did you know that the Facebook page for Myositis Support and Understanding titled “Understanding Myositis,” strives to provide education, awareness, and news updates about Myositis and about us to help patients, caregivers, friends, and family members to help understand and learn more about this rare disease?
Juvenile dermatomyositis (JDM) is a rare autoimmune inflammatory disease affecting the muscles, blood vessels and skin. JDM affects approximately 3 in every 1 million children each year. Patients with JDM have weakness in the muscles around the neck, shoulders, hips and thighs. This makes it difficult to climb stairs, rise from a chair, wash hair and get off the floor. […]
Inclusion body myositis (IBM) is a rare muscle disease which is characterized by chronic muscle inflammation and weakness. Unlike dermatomyositis and polymyositis, inclusion body myositis affects both proximal (close to the trunk) and distal (away from the trunk) muscles. IBM also has a degenerative component.
Polymyositis is a rare muscle disease caused by inflammation of the skeletal muscles and the surrounding tissues, such as the blood vessels that supply the muscles. Polymyositis is caused by the body’s immune system attacking its own muscles and tissues instead of foreign invaders such as viruses and bacteria. Polymyositis causes muscle weakness typically in the shoulders, hips, thighs, upper arms and neck. There is can be pain or tenderness in the affected muscles.
Dermatomyositis is a rare autoimmune disease, occurring in only 5-10 people per million, which is caused by the body’s immune system attacking its own skin and muscles. This causes muscles and skin to become inflamed causing muscle weakness, skin rashes, and other organ involvement.
Expert Care at Cass Regional Medical Center Story of Tim Lee, Dermatomyositis patient The fall of 2008 marked the beginning of what would be a nearly 18-month ordeal of serious and seemingly unrelated illnesses for 52-year-old Tim Lee of Lee’s Summit, Mo. Severe stomach pain sent Tim to an area emergency room for treatment, where doctors ordered several tests, including […]
Juvenile Dermatomyositis, Inflammation, and Calcifications Autoimmune diseases, when the immune system attacks certain areas of the body, affect more than 23 million Americans, more so women than men. Some autoimmune diseases are well known, such as systemic lupus erythematosus, and others are rarer, such as juvenile dermatomyositis. Juvenile dermatomyositis (JDM) is found in people less than 18 years of age […]
Updated: Facebook group, goals and the future of Polymyowhat (Note: Polymyowhat: Understanding Myositis is now Myositis Support and Understanding, a 501(c)3 nonprofit.) Update: Polymyowhat.com and its future is now the future of MSU. The below was written prior to our name change and 501(c)(3) status. As the Polymyowhat.com blog and Facebook group creator, I want to share a few things with […]
We know we cannot avoid stress; it is simply a part of everyday life. Whether it is stress over our finances, relationships, work, or our health, or the health of a loved one. Stress can take a toll on our body, even more so for those of us that have a chronic illness like Myositis or any other autoimmune disease. So what does stress do to our health?
There is an unfortunate stigma on many diseases that are painful and debilitating leaving us no longer able to work or to participate in what was once a “normal” and active life. Some may not show any outward signs of illness. These are referred to as invisible disabilities. There are many such diseases that can fit into this category: Lupus, Rheumatoid Arthritis, MCTD, and Myositis, to name just a few.
Myositis Awareness – An informational journey NOTE: For updated information about myositis, MSU, and our programs, use the navigation menu. The information contained below is from 2010 when MSU was not yet a nonprofit, but rather a support group only at that time. Last Monday, September 21, 2010, was Myositis Awareness Day; a day set aside under a house resolution […]