My name is Ali Gutierrez, and I’m a registered nurse, a PhD student, and the daughter of a woman who died from complications of dermatomyositis (DM) in 2022. Since my mother’s passing, I’ve dedicated my life to advocacy, research, and storytelling, not only to honor her memory but to change the way patients like her are treated, understood, and believed.

A Mother’s Strength

My mother, Lulu, was a single mom who raised three daughters after immigrating to the United States from Mexico. She didn’t speak English, but she worked tirelessly: cleaning homes, stocking shelves, making tortillas at a hot factory. She did everything she could to provide for us. My mother did not have family in the United States. She sacrificed and left everything she knew behind to provide her daughters with better opportunities. She was fiercely independent, full of warmth and grit, and never missed her morning cup of coffee. That cup symbolized calm and joy for her, no matter what life brought her way.

In early 2022, my mom began experiencing shoulder pain, fatigue, and a rash across her chest, back, and arms. Despite being a nurse myself, healthcare providers repeatedly brushed off my concerns. “Dermatomyositis doesn’t cause pain,” one rheumatologist said flatly, refusing to test her. She was given Tylenol. An ER physician even said, “I don’t mean to sound harsh, but unless she is dying, there is not much we can do for her.”

Meanwhile, she lost the ability to lift her arms. Then her legs became so weak she couldn’t walk. Then she couldn’t swallow. I brought her to multiple emergency rooms, multiple specialists, advocating fiercely at each one, but no one listened. Someone even said, “You are wrong. You don’t need a rheumatologist; you need a dermatologist. It’s in the name.”

Eventually, she was admitted and diagnosed by a neurologist, but by then it was too late. My mother was deeply depressed. She briefly entered remission before relapsing and was placed on a ventilator. She passed away on November 10, 2022, surrounded by her daughters, holding her hand. She was 62 years old.

A Mission Born from Loss

Losing my mother this way broke me open. But it also lit a fire. I knew I couldn’t let her story disappear into the background noise of a system that routinely fails people like her: immigrants, women, non-English speakers, those from underserved communities.

Since her passing, I’ve become a vocal advocate in the myositis space. I presented her story to the FDA at the 2024 Patient-Focused Drug Development (PFDD) meeting, and I volunteer with organizations like The Myositis Association (TMA). I’ve spoken out on diagnostic delays, clinical bias, and the dismissal of pain in myositis care.

“Look, Mom”: A Legacy We Still Speak Aloud

My mother never had the chance to travel growing up in Mexico. Before she got sick I made her a promise that when I became a nurse I would take her around the world. And I did, to Europe, New York, and places she never imagined seeing. On those trips, my sisters and I had a ritual: whenever we saw something beautiful—an ocean view, a mountain range, a sunset—we’d turn to her and say, “Look, Mom.”

Since her death, we still say it. When we travel and pause to see something breathtaking, we whisper it into the air: “Look, Mom.” It’s our way of bringing her with us, of keeping her spirit alive in our joy and discovery.

Research with a Purpose

I am currently pursuing my PhD in interdisciplinary health, and my dissertation will explore how depression affects quality of life for those who live with dermatomyositis. While I’m still in the early stages of coursework, every assignment, every paper, every project is shaped by this focus.

As a community and a potential collaborator, TMA’s support means everything to me. I hope to work with TMA on patient recruitment, data sharing, and broader awareness-building in the future. I believe research should be deeply human, grounded in lived experience, and aimed at tangible change.

A Voice That Continues

My mother’s story didn’t end in 2022. It lives on in every talk I give, every survey I build, and every patient I stand beside. She is the reason I do this work, and the reason I won’t stop.

If you are a healthcare provider and take anything from her story, let it be this: believe your patients. Listen to their pain. And remember that behind every missed diagnosis is a family holding their breath, waiting for someone to see them.

For my mom. For every mother. For every patient still searching for answers.

“Look, Mom. We’re still fighting.”

The post Turning Grief into Purpose appeared first on The Myositis Association.

Kristin Hicks’s husband, Troy, lives with inclusion body myositis. Thank you to Kristin for sharing this snippet of life with myositis.

What is a fun fact about you, that has nothing to do with myositis?

I am getting ready to start my 30th year as an elementary school teacher. I am currently a teacher librarian in a K-4 building. For a fun little side gig, I am a consultant with Pampered Chef, a company that offers kitchen tools, food products, and cookbooks through online and in-home sales.

What was you or your loved one’s first myositis symptom?

My husband, Troy, noticed something was not right when he started having trouble getting up off of the floor and climbing stairs. There was also a physical difference in the appearance of his thighs.

How long did it take to receive an accurate diagnosis?

Troy was first diagnosed with polymyositis in October of 2017. This diagnosis came pretty quickly after seeking medical help for his symptoms. After several unsuccessful attempts to treat symptoms of polymyositis, we decided to try to get an appointment at the Mayo Clinic. Within minutes of seeing a doctor there, he was given the news that he probably had IBM. With confirmation through a muscle biopsy, he was diagnosed with IBM in June of 2022.

How has myositis affected your life?

Troy’s IBM has affected his life in so many ways! While we are lucky that he can still walk and do things independently, it has definitely taken a toll. He is sore every day. He has always been very athletic and cannot be physically active like he used to be. We find ourselves having to take note when we go places: Are there stairs? Is there an elevator? How much walking is involved? Do we need to get tickets in the handicapped section? Basically, we can’t do some things that we used to do together, and we always have to be aware of limitations when we make plans.

One thing that Troy hates most of all is that he has missed out on being able to do things with our youngest son. This disease not only affects physical health, but it also affects mental and emotional health as well.

How has your family/community supported you on your myositis journey?

No one in our family had heard of inclusion body myositis, including us. So there was a lot of learning and explaining in the beginning. Our families are amazing and great to have in our corner.

How does your care team of doctors, specialists, therapist, infusion providers, etcetera help you manage this disease?

I am thankful that Troy’s primary care doctor did not mess around. He did not hesitate to refer him to a neurologist right away. The neurologist acted quickly in trying different treatments for polymyositis, when they thought that’s what it was. After Troy was diagnosed with IBM, his neurologist referred him to a specialist in IBM. I don’t feel like any egos got in the way of him getting the care that he has needed.

What is one thing you wish every medical student knew about myositis, before they entered practice as a physician?

I wish that every medical student was informed about all the different types of myositis and at least had some kind of training on diagnosing them. I have heard about some cases where the patient didn’t get a proper diagnosis for months or years! One of Troy’s doctors stated that he remembers hearing about myositis during medical school, but the time spent on it was very brief.

I also think it is important for doctors to realize when something is beyond their field of understanding so they can send patients along to someone else who can help them when needed.

How has TMA been helpful to you and your family?

My husband and I have attended the past two TMA conferences. (We are planning to go this year too!) The conference is so helpful! We learn, get new ideas, and see that we are not alone in facing this disease.

Troy also attends TMA’s Men Managing Myositis and Military Veterans with Myositis virtual affinity group meetings. Those calls provide a platform to be able to communicate and share experiences with people who have the same disease.

Describe how you have advocated for the myositis community, and for all those on a rare medical journey.

I share a lot of TMA’s posts on social media, especially during May (Myositis Awareness Month) or World Myositis Day in September.

I also hosted a fundraiser for TMA last summer. I am a Pampered Chef consultant, and every year the company offers double funds on fundraising parties during the summer. I decided to run a fundraising party for TMA, and 30% of all sales (along with my commission) were donated to TMA. It was such a success that I’m hosting another Pampered Chef fundraiser this summer.

I think it’s important to raise awareness about this disease and the people suffering from it. And I think it’s important to support research to help find ways to treat and eventually cure it!

As a part of TMA’s Military Veterans with Myositis, Troy is working with other members to compose a letter to our Indiana state representative to get a proclamation for May as Myositis Awareness Month.

What is your most useful hint, hack, or tip for navigating daily life with myositis? Do you have a specific self-care practice or resource that you recommend to others?

Troy’s advice is to slow down and listen to your body. It will let you know what you can and cannot do. He believes that working out on a daily basis with light to moderate weight is so important in maintaining good muscle. He recently has incorporated water aerobics and swimming, which have allowed him to exercise at a higher intensity due to minimizing impact and muscle soreness.

Troy has also recently found an Ankle-Foot Orthosis (a brace that supports the ankle and foot for people with mobility issues) that works really well for him. It is lightweight, less “clunky,” and a lot more comfortable than his previous one. I am glad that he is finally wearing one consistently.

What words of encouragement do you want to share with others on a journey with myositis?

For my own mental and emotional health, I want to live in the present, tackle the problems we are faced with right now, and not worry about what the future might hold. I’ve always been an optimist, so maybe there will be treatment or a cure before Troy’s symptoms get really bad!

You can help Kristin raise funds to TMA through her Pampered Chef fundraiser. Shop now through August 15 and a portion of the sales will be donated to TMA.  

Donate directly to TMA

The post Living in the present appeared first on The Myositis Association.

My wife Marilyn has dermatomyositis, diagnosed in 2008. Her dermatologist initially thought she had lupus, but two years later she finally saw a rheumatologist who knew exactly what Marilyn was suffering from. “The Man,” as I call him, now manages Marilyn’s myositis treatment, and we often touch base with him about meds prescribed by her other doctors who don’t understand myositis.

Once we recovered from the shock of Marilyn being diagnosed with a rare disease, we learned all we could about DM. That’s when we joined TMA and began attending the TMA conferences. I consider myself a “care partner” as opposed to a “caregiver,” because we’re a team. We fight this disease together.

As her partner in this disease, I watch for telling signs. I notice when Marilyn gets fatigued, for example, or when her right eye starts to droop. When her skin flares, I know to draw a circle around the rash to see if it’s spreading, which means things are getting worse. I know how to lift her out of a chair, and I know when she needs rest.

When Marilyn was first diagnosed, we talked with our children about what myositis means and the impact it would have on all of us. The biggest disappointment for Marilyn was having to give up taking care of our young grandchildren. She no longer had the mobility or the energy needed to safely care for them. Instead, we started spending time with the kids through Sunday family dinners and attending their school and sports events, even if we had to watch from the car. Most of our grandchildren are grown now, but they still look forward to those Sunday dinners, as do we.

Myositis has challenged us but also helped us to focus on what’s really important. Before myositis, we enjoyed being active: exercising, traveling, dancing, and entertaining. Myositis took a lot of that away, but we learned to adapt, finding ways to still do things we enjoy.

We started traveling again, calling ahead to check for accommodations with handicap access and no stairs. When we go to the beach, I set up a tent so we can still enjoy the sand and surf. We even dance, albeit from a sitting position.

The decision to sell our two-story home and move into a one-floor townhouse was really difficult. Without the big yard, even the dog felt that one! But one-floor living made life easier for us. We installed a high toilet and walk-in shower and added a large patio with an awning so Marilyn can be outside without risking a flare from the sun.

Before we joined TMA, we’d never met another person with myositis. Thanks to TMA’s Annual Patient Conferences, though, we’ve met so many others who are in our position. We’ve even had conversations with some of the leading myositis experts in the field. Marilyn has become her own advocate, and I’ve met, learned from, and shared with others who care for someone with myositis. We now, and will forever, consider these fellow members of the myositis community our friends.

And we’ve learned so much through TMA. When we heard about new treatments like IVIG, we shared that information with “The Man.” We’re fortunate that our medical partner, her doctor, was open to trying new treatments. IVIG has made it possible for Marilyn to wean off prednisone and methotrexate after seven long years.

As a husband, father, and profesional, myositis has affected me personally in many ways. I’ve always made decisions based on how it will affect Marilyn and our family, so when she first got sick, I took early retirement. It’s tough sometimes, because I’m a very outgoing person. When I went back to work part-time, I laid down the ground rules with my employer: my schedule had to be flexible.

The toughest thing I struggle with is watching Marilyn’s pain and loss and not be able to fix it. I like making people smile or laugh; it’s good medicine, and I tend to use humor as a way to cope and communicate.

Marilyn and I are always looking and hoping for a cure. But we will continue to fight, we won’t let myositis win. And I will always be Marilyn’s care partner.

Ed and Marilyn McGrath have been committed members of TMA for more than a dozen years. They live in Troy, NY and are the proud parents of three children and six grandchildren.

This story first appeared in the Winter 2023 issue of TMA’s quarterly magazine The Outlook.

Please help TMA provide the kind of support and education that was so important to Ed and Marilyn by making a tax deductible donation now.

The post Partners in the fight  appeared first on The Myositis Association.

Editor’s note: This is part three of a three-part series of articles from Dr. Kevin Austin, Adjunct Professor in the Health Futures Institute’s Personalized Medicine Centre at Murdoch University, Australia. He lives with IBM and turned his research skills toward a study to understand the priorities of those living with myositis and their care partners.

By Kevin Austin

In part 1 of this series, we revealed the priorities and challenges for Australian IBM patients, carers, and families. In part 2, we found that IBM patients and carers were not coping well at all with living and managing the daily risks and challenges. In this final installment, we discuss what happened after the completion of our research project and how we went about putting words into actions with managing challenges faced by patients and carers living with IBM.

In assessing the challenges for IBM patients and carers and revealing that they are not coping well with them, we wanted to develop a blueprint for how to improve coping for these individuals. With the help of some knowledgeable consultants, a small team of IBM patients and carers who were interested in driving change followed a process focused on identifying activities to improve mental health.

The working group identified some interesting suggestions for improving your personal ability to cope, particularly with mental health, which are summarized below:

• Myositis patients and their caregivers face significant mental health challenges due to the debilitating nature of the disease.

• The condition severely impacts daily life, causing restrictions in mobility, socialization, and independence.

• As the disease progresses, patients often lose their ability to perform basic tasks, leading to a loss of dignity and increased reliance on caregivers.

• This situation creates emotional strain for patients, carers, and families, resulting in feelings of frustration, disappointment, depression, and anger.

Together with a review of the literature, the strategies we generated for improving your personal ability to cope revealed some interesting suggestions, particularly with mental health. An online or AI search can provide more information and resources related to these ideas.

Be kind to yourself

• “I just look for a window and go through it”
• Pace yourself – lighten your load – take on less, so you can cope
• “Pause for your cause”
• Celebrate all that you can
• Look after yourself

Mindfulness and meditation

• Guided meditation sessions
• Mindfulness apps and resources
• Deep breathing exercises
• Deep relaxation exercises

Cognitive behavioral therapy (CBT)

• CBT workbooks
• Online CBT courses
• Group CBT sessions via Zoom

Stress management

• Stress management workshops
• Progressive muscle relaxation techniques
• Time management and energy conservation tools

Emotional support

• Buddy system for peer support
• Virtual support group meetings
• Caregiver-specific support sessions
• Accessible professional support from clinical psychologists, in person and online
• Support network

Creative therapies

• Art therapy sessions
• Music therapy resources
• Journaling prompts and exercises
• Woodworking
• A Men’s Shed – community space where men come together to work on projects, socialize, and support each other

Physical wellness and movement

• Tailored and group exercise
• Movement programs
• Tai Chi

Social engagement

• Virtual book clubs
• Online interest groups (e.g., photography, gardening)
• Volunteer opportunities

Educational resources

• Webinars on myositis functional management
• Mini “how-to” videos on daily living skills
• Regular updates on research progress
• IBM-FRS – IBM Functional Rating Scale for keeping track of progression

Practical support

• Home modification checklists
• Equipment selection guidance – series of one-page fliers on selection criteria
• Accessibility improvement resources

Goal setting and personal development

• Goal-setting worksheets
• Positive affirmation exercises
• Personal development courses
• Adding meaning into your life – our changed reality
• Bucket list that’s realistic

Relaxation techniques

• Deep relaxation audio guides
• Yoga for limited mobility
• Aromatherapy resources

Technology assistance

• Training on assistive technologies
• Introduction to helpful apps (e.g., speech-to-text)
• Virtual reality experiences for relaxation
• One-page flyers on equipment selection guides

Financial wellness

• Workshops on managing healthcare costs
• Resources for accessing financial support
• Budgeting tools for chronic illness management

Spiritual wellbeing

• Meditation resources
• Online spiritual support groups
• Guides on finding meaning and purpose

Sleep hygiene

• Sleep hygiene education
• Relaxation techniques for better sleep
• Resources for managing sleep with physical limitations

Grief and loss support

• Coping with loss of abilities workshops
• Support groups for dealing with chronic illness grief
• Resources on acceptance and adaptation

Relationship support

• Communication workshops for patients and carers
• Resources for maintaining intimacy with physical limitations
• Family counselling options

Cognitive stimulation

• Brain training exercises
• Language learning resources
• Puzzles and games adapted for limited mobility

Humor and positivity

• Laughter yoga sessions
• Positive psychology workshops
• Humor therapy resources

Crisis management

• Development of personal crisis plans
• Access to crisis hotlines
• Resources for emergency mental health support

Accessing existing free self-help resources

• MindSpot – contact@mindspot.org.au
• Australian Federal Department of Health
• Mental Health America (MHA)
• National Alliance on Mental Illness (NAMI) helpline
• There may be other resources in your location

Nutrition and non-inflammatory diets

• Dietitian
• Nutrition planning tools
• Changing to non-inflammatory diets (Keto diet etc)
• Homogenization of foods

Adaptive cooking classes

• Cooking classes

Immersion in nature

• Bush walks
• Forest walks
• Forest bathing
• Coastal walks
• Fishing
• Metal detecting

Conclusion

By implementing these strategies, individuals and healthcare providers/supporters can significantly enhance the quality of life for IBM patients and their carers. The focus on accessibility, awareness, mental health support, peer networking, healthcare access, equipment resources, research, community involvement, caregiver support, and information on ethical considerations, like voluntary euthanasia, will create a supportive environment that promotes wellbeing and resilience.

Read the published results of this research

Listen to a podcast conversation about this article

The post Help for coping with IBM appeared first on The Myositis Association.

Editor’s note: This is part one of a three-part series of articles from Dr. Kevin Austin, an Adjunct Professor in the Health Futures Institute’s Personalised Medicine Centre in Murdoch University, Australia. He lives with IBM and turned his research skills toward a study to understand the priorities of those living with myositis and their care partners.

By Kevin Austin

My personal journey began with a chance encounter with a professor of neurology. The doctor watched me struggle to get up from the chair after my consultation and asked me a few additional questions. It turned out that her husband was also a professor of neurology. She mentioned my struggles to her husband over that evening’s dinner. That encounter led to my formal diagnosis of inclusion body myositis (IBM) approximately 10 years ago.

Having a name was a significant step forward as it enabled me to research information about my condition. My professional background was in medical research, computing science, and business marketing and consulting in both the commercial world and not-for-profit spaces. Hence, I was well equipped with the necessary skills to dig deeper.

To my horror, I quickly discovered that very little was known about the disease: there were no known causes, no treatments, and certainly no cures. As I got bumped around the medical system from pillar to post, little was forthcoming from any direction. We joined the Myositis Association Australia, a similar group to TMA here in Australia, and felt an immediate blast of fresh air. We were talking to people who understood our fears, uncertainties, and doubts. The connection led me to meet up with myositis researchers in Perth. In the face of such a dearth of information, I immediately volunteered to work with the Myositis Discovery Programme and the Perron Institute for Neurological and Translational Science at Murdoch University in Perth, Western Australia

The team was led by Professor Merrilee Needham and supported by a medical research nurse, Kelly Beer. Along the way, others joined our journey, including Bill Hawkins from Sydney, originally an engineer by training who also had extensive experience in research. He was our technical guru who spearheaded new techniques of group interaction across the myositis diaspora around Australia.

It turns out, that if you want to really understand what the issues, perceived risks, and challenges faced by patients, carers, and their families, you firstly need a very safe (non-threatening) approach, and secondly, you need to ask them directly. As researchers you also need to have the ability to cope with negativity. People need to feel safe in coming out with what truly bothers them.

Our two-phase study initially involved a small cohort of 23 patients and carers who met in a series of workshops and interviews to identify key challenges (themes). A second phase, involving 200 Australian myositis patients and carers, which included 149 individuals with IBM used an online survey to prioritize these themes and determine their current level of coping.

This process uncovered a set of ten significant priorities for patients and carers. The top ten priorities, in order of importance for both patients and carers, were:

1.      Uncertain future: Disease progression, housing needs, and loss of independence

Constant state of uncertainty: not knowing where I am in the overall scheme of things (lack of easy-to-understand disease stages) – what comes next? When should we downsize? Future requirements? How bad will it get? Loss of my independence…can’t even open a jar, having trouble with cutlery etc.

2.      Coping with daily frustrations

Coping with the daily grind of managing myositis challenges and issues: toileting (particularly outside the home), swallowing and coughing, general mobility difficulties like needing help getting off chairs, getting in and out of bed, mental and physical fatigue, showering, finding suitable technologies and clothing, getting out and about.

3.      Lack of cure, treatment, and understanding

Taking far too long for the medical profession to identify something is wrong. Allied health and general family doctors are largely unaware of myositis. Lack of treatment options. Wishing every day for treatment or something to at least slow the progression. Keeping up with new advances or treatment options. Little understanding of what the patient is actually going through. Lack of a unified view from medical professionals.

4.      Impact on carer’s capabilities and own needs

The carer often has their own challenges and has trouble supporting their patient sufficiently. Ability to participate in carers’ own interests is significantly impacted by requirements of caring. Not being physically strong enough to assist the patient. Being realistic and prepared to let go. Burnout.

5.      Change of roles and relationships

Roles are changing and feel overwhelmed with assuming new responsibilities such as main breadwinner, home maintenance, driver, carer, strain on relationships with children, grandchildren, partner now more of a carer than lover, loss of intimacy, greater workload around the house with cooking.

6. Getting information, education, and support when needed

Accessing information about high quality clinicians, and therapists in my area. Need for carer support groups and education and training. Lack of treatment coordination. Poor understanding of the complex world of the health system. Particularly poor understanding of myositis within the health system itself, its institutions, clinicians, professionals, and bureaucrats.

7. Significant impact on our mental health

Constant fear and anxiety of falling and its consequences. Frustration with diminished social interaction, not being able to take a break or have holidays. Not knowing who to talk to when feeling in despair. Loss of independence. Ongoing feelings of helplessness, hopelessness and anxiety, often leading to depression.

8.      Financial impact

Financial burden and cost of disability aids, products, home and vehicle modifications. Future requirements and budgets are a significant worry.

9.      Issues with Australia’s disability and aged care systems

Australian aged care and disability policies are difficult to understand and complex to navigate. Poor understanding of myositis within governments results in difficulty in patients being accepted. Recent floods in Australia have revealed inadequacies in the emergency evacuation protocols with those suffering myositis.

10.   Concern not covered by voluntary euthanasia

Wanting the right to choose euthanasia when the time comes. State legislation varies and concern that it may not be covered by our state legislation.

Having discovered what was important to myositis patients and carers, we wanted to find out how people were coping, warts and all.  Our second article will reveal what patients, carers, families, and friends struggle with.

Read the published results of this research.

Listen to a podcast conversation about this research.

The post Discovering priorities appeared first on The Myositis Association.

Noriel Cunanan lit up every room he entered. With his radiant smile and a generous, inspiring spirit, he brought energy and optimism wherever he went. A devoted friend, he always offered a helping hand, lifted spirits, and sparked fresh ideas.

His battle with myositis began suddenly with a rash in late February 2024, followed by shortness of breath just weeks later. Two emergency room visits led to an initial pneumonia diagnosis, but his condition escalated rapidly. By March 21, his oxygen needs grew so critical that he required intubation. Despite our greatest efforts, Noriel never learned of his diagnosis—anti-MDA5 dermatomyositis. Tragically, this disease took him from us in under three months.

Yet, Noriel’s journey sparked something extraordinary. His spirit, strength, and resilience brought friends, family, and even strangers together, forming an incredible network of support. Though we couldn’t overcome this disease, his journey inspired a shared mission to fight it with compassion and purpose.

In his honor, we created Nori’s Fight—a foundation dedicated to funding research, education, and support for those battling anti-MDA5 dermatomyositis. We envision a future where those affected by this disease have better resources, effective treatments, and, one day, a cure.

Noriel’s legacy powerfully reminds us of the resilience and strength found in community. Through Nori’s Fight, we honor his memory by building a brighter future for everyone affected by this rare condition. We invite you to join us in this journey—to spread hope, raise awareness, and support advancements that will make a difference.

To kick off this mission, Nori’s Fight recently held its first fundraising event: a golf tournament honoring Noriel and his favorite pastime. We plan to make this an annual tradition and look forward to expanding with new events that raise essential funds and bring us closer to overcoming this disease.

Julia Nickerson is the beloved partner of Noriel Cunanan and President and Cofounder of Nori’s Fight, a 501c3 nonprofit dedicated to raising awareness, promoting early detection, and furthering advancements in treatments for anti-MDA5 dermatomyositis and interstitial lung disease. Among Nori’s Fight’s first projects is support for TMA’s myositis visiting professor program to educate clinicians about anti-MDA5 dermatomyositis.

The post Remembering Nori appeared first on The Myositis Association.

Two women were, for me, like celebratory bookends to The Myositis Association’s International Annual Patient Conference in Baltimore September 6-8, 2024. One was the opening Friday night keynote speaker, Jessica Buchanan, who, together with a coworker, was held captive for 93 days by ransom-seeking Somali pirates. The second was Saturday night’s Heroes in the Fight Award recipient supermodel Karen Alexander, who for eight years has been held captive to dermatomyositis.

Both of these extraordinary women embodied what TMA’s Executive Director Paula Eichenbrenner identified as the life coping lessons for those who live with myositis: survival and resilience.

“I think the number one rule my colleague and I made at the beginning of this ordeal was we could feel any emotion—fear, anger, rage—but despair was not an option,” Jessica said. “Because we knew once we got to that point there was no turning back. I think anybody who finds themselves in some sort of situation such as this, where complete control is taken away from you on the outside, you struggle to find some sort of control on the inside.”

Jessica and her colleague were ultimately rescued by US Navy Seal Team 6. She now has dedicated herself to sharing her story with others who experience difficult life-changing events. Her message: Do not give in to despair. Be resilient.

In accepting her award, trailblazing supermodel Karen Alexander said the diagnosis of dermatomyositis totally changed her life forever. She also explained that family and friends helped her to use the emotional and physical turmoil she has been going through to be an advocate for others and herself in bringing greater awareness to the public about myositis. “This is not the life we wanted,” she said. “But it is a life in which we can thrive with the help of each other who live with this currently incurable disease.”

With my wife Nancy Marx Erickson, who was diagnosis with inclusion body myositis ten years ago, I have attended a few of these Myositis Association International Annual Patient Conferences. All have been useful and informative, especially for a caregiver who is attempting to be useful to someone who wants to keep their independence while being dependent. I found that the Baltimore conference allowed the individuals who live with these diseases to be the focus, the experts who can provide the truly accurate information. As a couple of women with myositis said in meetings, “We often know more than the physicians treating us because the disease is so rare.”

In the closing session on Sunday, Dr. Victoria Shanmugam, Director of the National Institution Health’s Office of Autoimmune Disease Research, pointed out that only seven to eight percent of the entire population of the United States are afflicted with autoimmune diseases, and 80 percent of those are women.

Given those facts, I thought my wife Nancy Marx Erickson said it best in introducing Jessica Buchanan when she said, “A principal self-educational reason for each of us to be active, supportive participants in the Myositis Association is to help one another to demonstrate strong resilience in the middle of a life-changing event and identify our autonomy and choices within our daily myositis journey.”

The post Celebrating our Myositis Connection: Reflections on TMA’s 2024 International Annual Patient Conference appeared first on The Myositis Association.

• What is a fun fact about you, that has nothing to do with myositis?

We got tired of our corporate America jobs and long Chicago winters and moved to Costa Rica with our son, Ric, who was nine at the time. Dan drove a Toyota and Alicia drove a Mitsubishi from Chicago to Costa Rica where we lived in a small fishing village from 1997-2001. That small fishing village now has a Hard Rock Casino and fast-food restaurants, so we are thankful to have lived there when we did.

• What is your most useful hint, hack, or tip for navigating daily life with myositis? Do you have a specific self-care practice or resource that you recommend to others?

We attended a “hints and hacks” session at the TMA Annual Patient Conference in Orlando in 2022 where someone showed a handheld bidet. That was a game changer! That alone was worth the price of admission.

• What was your first myositis symptom?

Dan has IBM, so his first symptoms were muscle weakness, falls out of the blue, and difficulty climbing stairs.

• How long did it take you to receive an accurate diagnosis.

The diagnosis took about three years. We would tell Dan’s primary care physician of some of the things we were noticing, but there was no follow-up. When reeling in fish became a challenge, we said, “There is a problem, and something has to be done.” That is when we were referred to a rheumatologist, who suspected myositis, and a muscle biopsy was ordered.

• How has myositis affected your life?

Inclusion Body Myositis (IBM) has affected EVERY aspect of our lives. We downsized and moved into a condo so that less maintenance is involved. Everything takes a lot more planning and time. We have learned to be patient and flexible.

• How has your family/community supported you on your myositis journey?

We are on a mission to have IBM become presumptive service connected through the Veterans Administration so vets with IBM can access the services they need. Family members have helped tremendously by meeting with their senators and representatives, personally delivering letters, and also mailing letters. Through the process they have become advocates and are educating others about this rare muscle wasting disease. They have also signed and shared the petition established to garner support for the cause. Sign petition: Help Catastrophically Disabled Veterans Get the VA Benefits They Deserve · GoPetition.com

• How does your care team of doctors, specialists, infusion providers, etc. help you manage your disease?

While there is currently no cure for IBM, our medical team monitors progress and ensures we receive any durable medical equipment that is needed. We love our physical therapist. Staying active is the only treatment we have.  

• What is one thing you wish every medical student knew about myositis, before they entered practice as a physician?

That IBM exists! We want doctors to know about myositis and recognize the symptoms so that the chance of receiving an accurate diagnosis is increased. 

• How has TMA been helpful to you and your family?

We love the sense of community and access to Zoom meetings for the TMA Military Veterans with Myositis Affinity Group and our local Keep-In-Touch support group (KIT). These give us the chance to get to know others who truly understand our illness and the challenges we face.

• What words of encouragement do you want to share with others who have forms of myositis?

Embrace the “spoon theory” and listen to your body. Some days you just can’t do what was planned, and that’s OK. And always rely on Faith, Hope, and Love!

The post Dan and Alicia Lowther appeared first on The Myositis Association.

Bonnie’s Story

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The post Bonnie McClun: Care Partner appeared first on The Myositis Association.