I am a fairly new addition to this amazing organization and I have to say that I am so very grateful and blessed to have found them! I was diagnosed with Dermatomyositis in 2002 not long after my 30th birthday and it's been a challenging journey ever since, however at the same time it's also been a blessing. I wish I had this kind of support with MSU back then, I could have really used all the resources, support and love that Jerry and his team provide for everyone at MSU. I highly recommend this organization and encourage anyone who is challenged by myositis, including all care partners involved and affected. This community keeps me uplifted when I would otherwise feel down and lonely. It's nice to know that there are people out there who understand my pain and myositis life and who are kind enough to back me up when needed.
Myositis Support and Understanding (MSU) is an exceptional non profit. I have been a member of MSU for a few years now, and decided to become a volunteer in January 2023. I was diagnosed with Juvenile Dermatomyositis when I was 7yrs old. Back then, there were no support groups to help people of any age. Not just with the physical aspect, but emotional trauma that comes with this disease. I'm now 48, and have been in a flare for a few years now. It was when I could no longer work and wondered if there were any support groups. That is when I found MSU. Even though I live in Canada (originally from Australia), MSU accepted me unconditionally. It was such a relief to meet people with similar complications of this disease, without judgement. MSU genuinely cares and is focused about people with myositis. In fact, MSU feels more like a family. MSU provides different types of support groups, a Financial Assistance Program, webinars, and so much more, with a strong committed focus on people. I have tried to be a part of other myositis organizations, but didn't feel the warm and genuine connection like I do with MSU.
Very supportive community. From the heart support groups and webinars, financial assistance and facebook group. So many ways to get support and learn.
Previous Stories
MSU is all about the patient. Support education and even financial support. They have been there for me and helped guide me through my journey with Myositis. I found them just before I got diagnosed. Was just having it as a differential. They accepted me. They helped me with advocacy for myself and helped me realize it’s my health and that I can’t be a people pleaser when it comes to that. I’m important. My health is important. I deserve answers.
I was diagnosed with a rare muscle waisting disease called Inclusion Body Myositis on November 30, 2023 at age 43. The diagnosis was devastating. There is no treatment, no cure, and it’s largely known by many in the medical field. Often when I tell doctors about my diagnosis, they haven’t heard of it, or vaguely remember discussing it in med school. I was mourning the life I had thought I was going to live: watching my kids have kids, holding my grandchildren, playing with them, retiring with my husband when we reached the age. Traveling. Our annual float trips down the river with our closest friends. Working! Everything I was reading made it sound like I will be in a wheelchair, on a feeding tube, and possibly on a ventilator in my future. Then I discovered a couple Facebook support groups. The people in that group told me to join Myositis Support and Understanding (MSU). Once there I started reading so many articles telling me such different information than what my neurologist told me. She told me not to exercise, no physical therapy. That it will cause more muscle inflammation and decline. But as it turns out, that’s outdated and dangerous advice! People with myositis should be as active as possible, to maintain what mobility they still have. It’s a matter of “use it or lose it.” This is why MSU and groups like it need to exist, need funding, and people need to have more access to it. MSU works with researchers, and research is desperately needed in the myositis and medical communities. At bare minimum to make other health care providers aware of myositis, and what the correct protocols are. So people who are given this scary diagnosis the correct information on how to best help themselves.
MSU has provided me with support and encouragement through articles, speaker events, and online chat support groups. It makes me realize that I am not alone in my disease.
MSU provides a wonderful support system for myositis patients and their caregivers. They are also a great source of educational information from leading physicians and researchers in the myositis field.
I have written 3 other reviews of MSU, one under my name here, "Mary L." and two as a nameless volunteer. Those were loooooong and this will be much shorter. As I have written before, MSU is a prototype for what a nonprofit that serves patients with a rare disease (types of idiopathic inflammatory myositis) SHOULD BE. I have been a volunteer for MSU for 3 years and interact with myositis patients in our online forums, as well as in our online groups on Zoom and Clubhouse. I found MSU very quickly after I was diagnosed with dermatomyositis, May 9th of 2021. And I am soooooo thankful that I did! I continue to be so wow'd by the services MSU provides, and particularly our Financial Assistance program, which is very rare, particularly in the "rare disease space." MSU becomes a family for many of us - and those aren't just words. If you have any type of myositis, or are a care partner to someone who does, come join us and find the amazingly supportive family that we are as well as all of the support resources that we offer!
Previous Stories
I am now in my 3rd year of volunteering with Myositis Support and Understanding. And I am STILL utterly amazed at how HUGELY patient centered and focused this 100% volunteer run organization is. Sometimes, it is hard to believe it's real, but oh, it is very, very real. What MSU offers in real patient centered education and support still WOWS me!
MSU provides an outstanding website of patient resources and educational info AND has one of the VERY few Patient Financial Assistance programs in the RARE space .It isn't just a list of resources and other places you can go and check out for money that may be available for very specific needs. It is a program (again, administered by volunteers) that myositis patients can apply to for many types of financial needs.This is HIGHLY EXCEPTIONAL!
MSU has a listing of all kinds of support groups happening weekly - often, with multiple groups per week. NO week passes without at least 2 support groups - EVER!
I could go on and on, but I also wrote about my experiences with MSU in 2021 and 2022. And everything I wrote then, continues to apply now. I doubt that there is any other non-profit serving patients that could even begin to match MSU and all it does and gives to PATIENTS with myositis and their care partners. As a woman newly diagnosed with dermatomyositis, the day I stumbled upon MSU, was a life-changing day. And continues to be so! I volunteer to try and give back just a bit of all I have received and continue to receive. Thank you from my heart, always, MSU!
I was the Sports Editor for the Hattiesburg (Miss.) American for many years and coached summer youth baseball in Hattiesburg for quite a while. Currently, I am employed part time by Pearl River Community College.
Back in 2014, when I was diagnosed with a very rare, muscle wasting disease called Inclusion Body Myositis (IBM), I was told that there was no cure or medical treatment available for my disease. I was also told I should limit doing any activity that required some type of physical movement because it would speed up my Myositis progression. Falls led to the use of a cane, then a walker, then a regular wheelchair, then a power wheelchair with a lift. Stairs became impossible. Then came home ramps, remodeled bathroom, LiftSeat toilet, Hoyer, etc. One major expense after another has been overwhelming, plus the inability to drive Myself.
Today, after a recent driving evaluation and extensive evaluation process, I have been approved for a state grant for some of the internal equipment necessary to convert a van that would allow me to continue to drive - live more independently. However, like most grants it is limited. We currently find ourselves short of the funds to acquire the used ADA accessible van with modifications to drive. Plus, home renovations (expanded closet entrance, front-door ramp) ongoing and ever increasing medical expenses. We estimate that $75,000 will be needed to cover these expenses.
Some of the most amazing and inspirational people I've ever known are the ones who have reached out and encouraged Martha and I to establish this GoFundMe Page. My friends have convinced me that asking for a hand up is not asking for a hand out or we would have never moved forward with this process. Martha and I would appreciate more than you will ever know and assistance in deferring some of these expenses necessary to allow me to continue to work and live the most independent life possible. God Bless, Martha and Chuck Abadie.
MSU has saved my life many times by allowing me to help others by volunteering. And when I was on deaths door - 3 times - the support and prayers of our members got me through it all. It’s an honor to be a part of MSU and meeting such wonderful people around the world living with a type of myositis.
Previous Stories
As a patient and the president of MSU, I am so thankful for the people behind our all-volunteer organization and for our members, donors, supporters, and partners. MSU truly is a from the Heart nonprofit providing support, patient financial assistance, and so much more!
Remember, the Myositis Empower Walk is in October each year and we want YOU to join us, live just outside of Vegas and via live stream!
Myositis Support and Understanding (MSU) is an exemplary nonprofit organization to volunteer with and be a part of. MSU is committed to providing heartfelt support and prioritizing the voices of patients, including those of its dedicated volunteers.
The organization’s initiatives—including support programs, financial assistance, cutting-edge research, and educational webinars—are all designed with the myositis community's needs at the forefront. MSU strives to create an inclusive environment where everyone feels valued and empowered, making it a leading force in myositis advocacy and support.
Previous Stories
Myositis Support and Understanding (MSU) saved my life. I was drowning mentally and physically after being diagnosed. I felt so alone and miserable. Then I found the MSU website and their support groups. I joined one and it was like a light shining in my darkness. I was no longer alone. I had found others like me who I could really talk to. I had answers to my questions and suddenly some of the medical mountains I had to climb became so much easier. I had found my family. I had found my light again. I found my passion for helping others with myositis by volunteering. This organization helps so many people with myositis from our support groups to our Financial Assistance Program to our patient centered research and so much more.
MSU has been my numer one source of support about my own disease (polymyositis)! They're pretty much the full package: their website is very rich with a lot of information, they have some wonderful people working on Youtube, Zoom calls, Webinars, among other things! I have no words to thank their work and how much it affects me positivitely.
Without this amazing support group, this would be an extremely lonely disease. Autoimmune disease affects every part of your body. It’s difficult to make plans. Each day can be quite different than the prior day. Friends get annoyed when you have to cancel plans. They cannot understand the volatility of it.
When you communicate with another person with the same disease, you can skip allthe questioning. There is immediate understanding and caring for each others well being.
When I received my diagnosis of Inclusion Body Myositis in July of 2021, I had a need for information. My Rush Medical neurologist and team have been excellent in advancing my knowledge and providing care and support. But I wanted additional information and support. And I found it at Myositis Support and Understanding Association through a variety of avenues including website and online meetups with others dealing with this disease. They are an excellent organization and meet the needs of patients, families and caregivers.
I had a large outstanding hospital bill from a biopsy I had done during my diagnosis for polymyositis. Being unable to work, all of the weight to help pay the bill was on my husband. I thought there was no one to help us until I discovered MSU's financial assistance program. Their generous assistance cut my bill down by a significant amount and granted my husband and myself an indescribable sense of relief.
They offer so much more than just financial assistance, too: monthly club meetings, weekly group talks, discussions hosted by specialists - everything someone with a rare disease could possibly need to feel supported and understood. I cannot express my gratitude and amazement for Myositis Support and Understanding Association.
As an active member of MSU for many years, living with Dermatomyositis for 15+ years, I can't speak highly enough about the kindness, care and commitment that staff and volunteers-most if not all people with forms of myositis-give to support their members. With MSU, there is always support and resources and they really go above and beyond to ensure you never feel alone, and do so with enthusiasm, determination, compassion and passion.
MSU Has meant so much to my family over the past 5 years. We cannot thank them enough. This event brings so many people together. That need to know they are not alone.
Myositis Support and Understanding is a premier provider of information to those who suffer from Myositis, a rare disease that receives very little information from the medical community. This disease affect every person differently. MSU provides us a community of disease sufferers the chance to share concerns and express our difficulties with like minded people. I for one am greatful.
I can't say enough good things about this non-profit. They offer clear, factual and up-to-date information for myositis patients and their families. There are many online support groups and webinars with top medical experts.
I was diagnosed with Dermatomyositis and ILD and have found Myositis Support and Understanding to be very helpful and informative. They help me understand this illness better. I feel lucky to have them to reach out to with any possible questions regarding Myositis. I am very happy to donate to their organization when I can because they are very helpful to patients dealing with Myositis on a daily basis.
I love MSU! This organization has the most helpful staff/volunteers in the world. People are passionate and energetic about the MSU cause. The MSU website helped me with unending amounts of information, that was easily accessible and understood. I had a horrible summer, of trying to get a diagnosis of myositis. Without the MSU website, I would have had no idea of how to treat my myositis and less social support as well (clubhouse). Here is my polymyositis journey: I started having light shoulder and hip weakness this year, however, I ignored the weakness until I saw a rheumatologist, who took out blood tests for antibodies for myositis markers this June. Then, after getting puzzling numbers back (3 categories were in the high range), I had to wait a month and a half or so to get MRI's of my shoulders and hips, to help confirm or deny a myositis diagnosis. Even after that, I had to get a muscle biopsy of two sites in my hip, and shoulder. The muscle biopsy took forever to read, because it was sent to the Mayo Clinic in Rochester. Finally, I have a diagnosis at the end of August this year (2022). Now, I am actively involved in the myositis community, trying to get help and help those that I can help with my knowledge and passion. This is one of the best charities out there. Super highly recommended!
I have been a volunteer for MSU for around 4 years I was surprise they could even use me as a volunteer as I didn’t know much about Myositis at the time.
In September 2017, after a muscle biopsy I found out I had myositis, a short time later I was officially diagnosed with Necrotizing Autoimmune Myopathy (NAM). I couldn’t even dress myself or put on my shoes or socks. I was very scared what the future would be like wanting to feel independent not wanting my husband to do everything. I still feel very tired and weak at times but can walk on my own and can do my housework.
I’m thankful I found MSU it’s like a special family we have here. I’m thankful for the leadership we have.
Previous Stories
It all started when i was hiking up a trail and my legs turned to rubber in cement I knew something was really wrong. I went though many doctors and even more testing In September 2017, after a muscle biopsy I found out I had myositis, then a short time later they officially diagnosed me with Necrotizing Autoimmune Myopathy (NAM), . Still doctors had no idea what I had or what to do. Going from doctor to doctor looking for answers I googled Myositis Support and was blessed with people who were knowledgeable, friendly and they educated me on the disease. I’m thankful for this support and friends I have made. We have one thing we all relate to a rare disease call myositis.
Connecting with Myositis Support And Understanding (MSU) was like finding family - people who understood the journey and burden of this rare chronic disease. MSU provides support and services to help ease the burden of patients, care givers, and families affected by the disease - financial, emotional, physical. MSU is "open" 24/7 for support worldwide and is one of the few rare patient organizations who provide financial assistance for medical expenses and household emergencies. I found deeper meaning and purpose to my life when I found MSU and I am proud to be volunteering to help live the mission of this organization to improve the quality of life of myositis patients.
Previous Stories
When I was newly diagnosed with a rare autoimmune disease, Dermatomyositis, Myositis Support and Understanding helped me work though my fears about what the future held for me and provided compassionate and caring support that helped me realize I was not alone with my feelings. Come for the support and stay for the family.
MSU offers hope when hope is gone. The organization prioritizes the patient in its' support groups, research, and every move it makes forward. It is a beautiful community that shares loving kindness and helps each person not feel alone.
When I was diagnosed with dermatomyositis after having a diagnosis of non Hodgkin’s lymphoma I was in a tizzy. So many aspects of my health was out of whack and I needed answers and support for this rare disease. That is where MSU came in. They were and continue to be a great source of support and information. Over the past five years I have connected with so many wonderful people who have become my “friends and family.” I wouldn’t be where I was today without MSU!
When I was diagnosed with Anti-MDA5 positive Dermatomyositis in December of 2021, I was overwhelmed. I went from teaching kindergarten and working 50 - 70 hours a week to barely being able to walk or function. My doctor at John Hopkins recommended that I look into the online support groups offered by MSU. She told me that no one can go through this disease alone. Fortunately, they were having a support group that weekend. I joined the Zoom call and immediately found a family that offered the much needed support. They helped me understand all of the tests, medical terms, etc. They listened to me cry over difficult tests and appointments. They listened when even the doctors and family members didn't.
After a few months of meetings, I chose to volunteer to begin the monthly Dermatomyositis support group. Since that time, I have joined the MSU Board of Directors and the committees that are focusing on Patient Centered Research, Advocacy and Diversity, Equity, and Inclusion.
I do not know where I would be in my Myositis journey without my MSU family. They have provided support that even my family could not provide because no one understands what we go through except other patients. I will forever be grateful to Jerry Williams and all the volunteers and patients at MSU.
This is one of the best of non-profits that I have ever worked with. It truly puts the patient first and it makes the community feel more like a family than just a non-profit.
When I was diagnosed with Necrotizing Autoimmune Myositis in the summer of 2020, I felt very alone. It was at the beginning of the Covid lockdown and I wasn’t able to be near other people. I was researching my new disease as my strength was leaving me. I was bed bound within 2 months of my diagnosis. MSU was there for me first on Facebook and then with their zoom and Clubhouse support group meetings. I knew that I had a brand new family who supported me emotionally and gave me guidance about medication and treatment advise, suggesting foods and with exercise and breathing advise. I no longer felt alone. I feel very blessed that I found this amazing organization. I have chosen to raise money so that MSU can continue to give patients the money that they need for medical equipment, stair lifts, help paying medical bills and travel to medical appointments. I have been on the board of other organizations and can honestly say that I have never seen a better non profit.
When my muscle biopsy revealed that I had Inclusion Body Myositis, I was lost. Because it is such a rare disease, none of my doctors knew anything about it. But worse than having little local medical support was not knowing how to live with the disease. When I found Myositis Support and Understanding, I was no longer lost. I found my people. Ones who lived every day with this disease. Ones who gladly shared their experiences and information and listened to my frustrations. In short, I felt that I had come home. MSU continues to make a major difference in my life as my degenerative muscle disease progresses. I know that the organization and the other patients are always there for me.
MSU is the only charity that I know that provides financial assistance to individuals for medical needs, e.g walker, visiting an specialist. As a patient with Myositis I have found that MSU has changed my life for the better, I would be totally isolated without their support groups online and their zoom sessions.. What a difference they make!
When I was newly diagnosed with Myositis, I turned to Myositis Support & Understanding for information about our rare disease, & find others like me who understands what I am experiencing. MSU is a great nonprofit that provides helpful resources & helps people live with this rare disease & it is comforting to know that MSU is there for us & that we are not alone in living with Myositis.
MSU has been such a great help in my life since my diagnosis of Necrotizing Autoimmune Myopothy in 2016. I was so lost and alone and finding MSU has made me know that I am not alone in this and there is great support out there. Since then I have joined as a volunteer. I don't know mentally where I would be without MSU
Myositis Support And Understanding was the first page I found when I was diagnosed with Polymyositis by a positive deep muscle biopsy. I had no one to turn to. Nobody here had heard of the disease. My doctor had actually never heard of the disease & therefore had nothing to offer to me. So I suffered in silence and ignorance, until bingo! There you were! My first “hit” on the internet! Sure, there were medical articles by NIH and others, but nothing directly for me, the patient. And so I turn, almost daily, to MSU for guidance and help. Through their unswerving dedication, one day, soon, this group of horrendous diseases will be as much of a household word as Alzheimer’s. You not only spread awareness to patients and the medical professionals, you are a font of compassion, empathy, and extremely valuable information that we are able to comprehend, and you give us hands-on ways to help us improve our lives. But maybe even more importantly of all, you give us HOPE. Thank you, MSU, for being there—for me and for thousands of others. ❤️
myositissupport 09/20/2021
Thank you for such kind words about our organization! We are so grateful you have found us and that you are a part of our family. Yes, HOPE, and not having to live with this alone. We are here for you!
As a caregiver for my husband living with dermatomyositis, the challenges are many. But, I have seen how MSU has helped him grow and the website has helped me to better understand what he goes through, including chronic severe pain. I often feel helpless, but when I see the work he does, and the many he helps through MSU, it makes me so very proud of him. Keep up the great work MSU!
MSU has been an incomparable resource. From initial diagnosis to the everyday struggles of living with Myositis, MSU has been there for me. Truly a priceless gem that I am thankful for everyday.
I was diagnosed with dermatomyositis in 2018 and recently joined this group. I sure wish I had joined earlier because the benefit of listening to and speaking with other people who also have a rare disease is immeasurable. In addition to emotional support, the group offers the benefit of it's years of experience and learned expertise in dealing with all aspects of having a rare disease. The group leaders are dedicated and unwavering in their support. I couldn't ask for more.
When I found MSU I found a family that it si always there! Even if I'm thousand of miles distant, an ocean between us, I consider all of the memeber my family. They understand me, and always have a good word .
People behind MSU are amazing!
Love you guys!
Roberto
Previous Stories
I was diagnosed with Dermatomyositis in 2012. I was unable to walk, stand and could not breathe without oxygen. I was isolated, lonely and knew of no other person with myositis to talk with. I was also forced to take leave from work.
About one year or so later, I stumbled upon the Myositis Support and Understanding Association online. It opened doors and immediately connected me with people that also had myositis. We could share stories and speak directly to others with our disease. This association was an emotional lifesaver for me and many others. One hears that sentiment echoed over and over during live Zoom sessions.
Many years later, MSU continues to grow and advocate for patients. Informative video sessions are held with doctors who have expertise in the myositis field, physical therapists, Myositis doctors answering questions regarding Covid and autoimmune compromised individuals, to name a few. Regular Zoom sessions are held throughout each week and pop-up sessions for anyone needing to talk or feeling alone. There is always someone across the globe to speak with when you have the need. Additionally, financial assistance is now given to those who need monetary help due to myositis.
I have volunteered with many non-profits over the decades, however, Myositis Support and Understanding is by far the one with the most involved, active all-volunteer staff. There are no bricks and mortar - everyone is virtual!
Having a rare disease, dermatomyositis, it’s very important to me to connect with others going through same thing. I can always count on this group to provide support during good times and times that I struggle
Previous Stories
I have IBM, a degenerative muscle disease. The Myositis Support and Understanding organization provides outstanding service. Through MSU, I am able to connect with others who have IBM, and share stories as well as learn about new assistive devices, clinical trials and breakthroughs in research. MSU also supports research and many online workshops for its members. I don't know how I would get through this journey with IBM without MSU.
MSU has been such a blessing in my life as a patient. When your body suddenly fails you, and you're told you have something quite rare, you feel so alone. MSU has given me a family of people who know exactly what I'm going through, and we're able to help each other.
Having a rare disease means you are a chosen one, and not in a good way. And you feel so alone, because no one has ever heard of your rare, often invisible, definitely non-pronounceable disease. No on. Only by some miracle of google search, you find your tribe, the Myositis Support and Understanding Association. And you "meet" through the miracle of Facebook many others who share your rare disease, and know how to say it!! And, MSU provides a wealth of information and documentation and resources designed to help me live my life with myositis in the best way possible. And the helpful, generous of spirit people in this community collectively offer tips, advice, and we are patient focused. I can not stress that enough. It is so refreshing to find people who want to help me have some quality even though I'm living with a disease that ravages my body. If you or a loved one becomes a chosen one to have any type of Myositis enter your life, your welcoming tribe awaits at MSU. Check them out. You will be glad you did.
I suffer with Inclusion Body Myositis, a muscle disease the prevents me from cleaning myself after using the toilet.
MSU enabled me to purchase a Swash 1400 Bidet. I was able to keep my independence. Thank you MSU!
MSU has been indispensable for me and my family. I was recently diagnosed with polymyositis and was scared and felt very isolated. I needed to know more about my illness and what I could do to help myself and my family understand it. and what we could do to help me through it. I immediately went online in search of answers. By the grace of God I found MSU. Through them I received so much education concerning this illness and types of treatments I could anticipate. I now feel better informed to advocate for myself concerning this disease. I understand my symptoms and what I need to do to support myself in getting better. I go to the MSU website almost every day researching science backed info. I join sessions online whenever possible. I cannot even begin to imagine trying to handle all the various aspects of this rare disease without the support of MSU. They have been a lifeline for me and my family.
When I was 1st diagnosed with Myositis I was completely lost. I didn’t know anyone in my area with this disease. I didn’t know how to explain my condition to my children who saw mommy looking the same but complained of pain, extreme fatigue and weakness. MSU saved my life. They not only restored joy, helped me to know I wasn’t alone but they also provide more information to about my condition than the doctors I had at that time. I am forever grateful for MSU. They will always hold a special place in my heart.
I was diagnosed with Dermatomyositis in June 2015 after two weeks of intense diagnostics while becoming sicker and sicker and weaker and weaker. I had never even heard of this rare disease. Skimming through Facebook I stumbled on MSU’s page. It was a welcome treasure trove of information. They also sponsor regular video support meetings which allow us to meet with and chat with other patients. They sponsor on line seminars led by leading researchers in Myositis and Rheumatology and keep us up to date regarding clinical trials for new drugs and treatments. I have not required but they also provide financial assistance both information and actual financial aid for patients finding themselves in a temporary cash bind. Jerry Williams the Founder and President is also a patient and participated in leading most of these activities himself. My understanding is that no one at MSU is paid so all funds are directed to assisting and supporting members and participants.
Previous Stories
This organization is far more than a support group. It has provided me invaluable technical and medical information from reputable, really the top sources in a field that is severely under researched. There are live webinars that cover many aspects of living with Myositis, drugs and treatments, physical therapy and living in a world that literally doesn't see our invisible disease most of the time. Jerry Williams is an incredible human being and a Polymyositis patient for many years, as the principal Founder, he still makes daily contributions and is continually improving the Facebook pages, The Inspire Site, and the MSU Homepage understandingmyositis.org to enrich the user experience and provide more and more support for patients. Most remarkable is that none of the staff and support workers are paid, which if you look at the web site you would never believe! I am thrilled to be a member (its been nearly four years now), and it's definitely a nonprofit worthy of your support. By the way, the picture is me in February 2016, when I was very debilitated, unable to walk, or swallow, and strapped into the wheelchair (to give you an idea of the condition of some of our members), after many months of treatment and therapy I am much better today, though I still suffer from the disease.
MSU has always been on the forefront of supporting patients regarding the rare disease they have. There aren’t very many of us as the diagnosis is rare, but the ones who are there are searching for answers, hope and freedom. MSU helps guide patients and their families through the treacherous roads that accompany the disease of myositis. From learning opportunities, financial scholarships and group discussion meetings, MSU has filled a void in my life as a patient with myositis. Thank you Jerry and all the volunteers who make MSU a success, helping others!
5 stars are noth enough to rate this wonderful group, why? Because as patient of a rare disease is not easy to find information to help you to understand and deal with it, but here, we, the patients, have a lot of resources to keep fighting but overall we find respect, empathy and compassion. Thanks so much to MSU and specially to Jerry and Emily for their dedication.I was diagnosed with systemic Amyopatic Dermatomyositis.
When I was in the “need to know” after diagnosis with Polymyositis in late 2015, I found MSU! A wealth of information, a welcoming group, friends, my people. Losing my job of twenty yrs, not understanding what was going on with my body, the loss of health insurance, the doctors appts & the testing took its toll. Mentally, physically and emotionally, not to mention financially. MSU was there. When things got really out of whack...MSU helped me financially with some medical bills. It took so much pressure off my husband & myself at that time and allowed us to catch our breaths. I can’t thank the group & MSU enough for helping me to understand this disease. We’re not “chronically ill...we’re medically fascinating”.
I love MSU. I’ve gotten so much support from zoom meetings. It’s the only place that I find understanding people. It’s so wonderful to talk to others about our rare diseases. The admins are the best.
This group is an excellent source of information and motivation, emotional and moral support. It is well managed. With these diseases being so rare, it is hard to find this kind of support in one's community and consequently, one can feel very alone and misunderstood. This site helps reverse all that.
Myositis Support and Understanding has been so beneficial to me personally. We have information available to us, as well as support from other members when questions pop up.
In addition they have free monthly meetings on line video chats. We can all see each other and talk freely about our conditions, and get suggestions from others suffering from Myositis.
They offer Grant's for those in need, and they have just started a memorial fund in memory of a dear member and a big contributor to our community.
I’ve had dermatomyositis for over 24 years. It took me 8 years to be diagnosed from the acute onset. It took me another 8 years to learn about any kind of support community for people who had the same disease. I found that in two FB groups. One of those groups was headed by Jerry Williams (later to become MSU). As I was in the process of publishing a book about living with DM I contacted him to see if I could be of service, because I knew how isolating the process of diagnosis and living with a rare disease was. We quickly found that our desires: to help others to not feel alone with this dreadful disease and to educate and support others - were aligned. He asked me to help him and Sandy with the support groups, and later to help start the non-profit. It has been one of the greatest pleasures and honors of my life to see this group blossom into a wonderful resource for a previously underserved population. I am so proud of all that this organization has accomplished. As a patient, I still go to the groups for support and my own health questions, as well as to share new adaptive advice I’ve gleaned along the way. There is strength in numbers and experience. I can tell you that this organization continues to help all of us, even those who volunteer.
I have dermatomyositis and its a challenge daily to keep healthy with the constant fear of catching a cold or getting cancer this is a place where i get alot of information.
MSU provides straight-to-the-point, research-backed education and support for patients and family members affected by inflammatory myopathies. What sets MSU truly apart, however, is its tapping into technology to connect patients with face-to-face video support streams!
On a personal note, this group helped connect me with fellow patients in my area. With rare diseases, you rarely meet another patient face to face, and this made it possible!
Thank you, for helping myself and others to understand and gain knowledge in our disease.
I’m so very grateful that you care to help find resources and information in my Myositis disease.
This organization has been one of the best support systems that my family could have asked for in a very stressful time when NOBODY seems to have answers. From myself as the patient, to my husband as a caregiver and even my kids...we are all grateful for the SUPPORT and UNDERSTANDING we have received.
myositissupport 02/22/2020
Join us in honoring Rare Disease Day 2020! Check out our upcoming live online video education sessions, and if you are interested in empowering at-home volunteer opportunities, submit your interest to be entered for a chance to win a $500 Visa gift card, sponsored by Plasma Services Group (PSG). See full details for this and all of our Rare Disease Day/Week events at Understandingmyositis.org/rare
Since I was diagnosed with polymyositis in 2017 . This organization has helped me tremendously. Information, how to videos, speaking with other members. Can't say enough good things
Hello Greatnonprofits!,
I battled for a decade for a polymyositis diagnosis. No one would believe me. I was anti-JO1 positive with MRI findings but everything else was non contributive, "just" muscle pain, clumsiness and overwhelming fatigue. Without MSU to teach me about what JO1 meant, what to ask for, how to deal with doctors I can safely say I would not have made it.
Thanks MSU! Keep it up!
Best regards
Kyle
MSU has been such a life changing organization for me. I have found a wealth of knowledge and information that pertains to me in a world that does not have an abundance of resources in this area. I have also been able to network with truly wonderful people. I hope many more will take advantage of connecting with MSU!
Myositis Support and Understanding has been so helpful to me providing for travel assistance to another state for medical care, educational support and peer support. Thank you!!
It’s hard to find words to express the gratitude I feel towards Myositis Support and Understanding. Having board members and the President being Myositis patients themselves (and ALL volunteers!) gives them such a unique way to really help our community, they KNOW what their members are going through. Thanks to MSU I have been able to find so many useful resources, stay on top of current and future Myositis disease and treatment research, and find personal support through their Facebook private support groups as well as the websites maintained by MSU. I was also assisted financially early into this disease process, when bills were piling up and I was in the hospital, MSU was able to assist me with getting some crucial bills taken care of. I’ve also had the honor of becoming a volunteer and assisting with some aspects of Facebook groups which is something that has helped me regain some sense of self value by being able to give back.