Reviews

Hello, my name is Sandra and I live in Florida. I went through a difficult time after hurricane Ian. My apartment was destroyed, and I had no money and nowhere to go. I couldn’t think straight, so I had no idea about my next step.

Then I contacted Myositis Support and Understanding (MSU) and asked if there was anything they could do to help me. The answer was YES! Through their Myositis Patient Financial Assistance program, they were able to put me up in a hotel while I waited for a new apartment.

MSU made it easier for me to relax and put myself together. The first few days following Ian, I missed medications including an infusion which added more chaos and worries. Thankful for the help, I could finally relax and start preparing myself for the next steps.

The financial assistance team was compassionate and helped me just by listening. Because of your kindness and help towards my situation, I got through this most difficult time.

Many blessings to the team at MSU

I want to say that this program is a gift sent from heaven. With rare diseases, life is a struggle with our health and financial stress, causing us more harm. If not for the help of the Myositis Support and Understanding Financial Assistance Program, I would have lost my home. This program has helped to lift a huge burden of financial distress, and I pray the program will be able to continue. From the bottom of my heart, Thank you! Patty T

D. Williamson shared, the following with us:

I joined my first Myositis Patient Video Support session in October of 2019. I have to say it is one of the best choices I’ve made about getting support for myositis.

I am fairly new to internet support groups and social media (FB, IG, Youtube) and I had never joined a live group. I guess I’ve always thought they were just something for people to be seen, or a “poor pity me” place, or – I must confess, I didn’t think I had anything to really contribute. Plus, what if I didn’t fit in, look right, sound right, etc., (man does that sound like high school anxiety).  I WAS WRONG!

Everyone had something to share that was beneficial, everyone was welcoming, and best of all, since this group is specific to myositis patients, we all had something in common. The age groups varied – I think I was the oldest at 61yrs old. And, no one cared if we were “dressed”, styled, made up, in a chair or in a bed, or even in a hospital room!

So, what I’m trying to say is that if you are still thinking “maybe” you’ll join an upcoming live video support session, DO IT. You have nothing to lose and everything to gain – including new friends, shared experiences and tips, and maybe you can even put a face to the names of those with whom you talk to in the groups.

Information and experience of myositis are abundant. Some who “don’t know much” to those who are “well experienced, unfortunately”.

If you’re not sure how to join, the sessions are on the MSU website and the MSU Facebook page events section. Just follow the instructions. If you need help, you can contact our fearless leader Jerry Williams, or even me; I’ll try to help and not lead you astray.

I want to say a huge THANK YOU for the help of the MSU Myositis Financial Assistance program. This disease is horrible and it is a daily struggle because of the pain. We know that stress triggers flares and I have been in a terrible flare due to the stress of my house possible going into foreclosure, and the medical bills piling up. Due to the illness, my hours were cut at work and I was struggling. I am doing my best to work while I still can. No bank would help, so every day I worried what am I going to do? Then through MSU, I came across the financial assistance program info, applied, and was approved! What a huge relief! I am already coming out of this nasty flare because now I will not lose my home! You have no idea how much this means to me to have a program like this to help us while struggling with the disease. Thank you from the bottom of my heart!  — Financial Assistance Recipient

I am so filled with joy and gratefulness! Not just for the help but how the help has been given with so much support, timeliness, and understanding! I can’t express how much this will help me to become stable in my home! God Bless you all!

As a myositis researcher, I support MSU’s mission and their excellent work!!!

I have only recently been diagnosed with Myositis. This organization has helped me more than I could have imagined. The information on the website is fantastic, the stories from people, etc, Before I found this group I was looking at my life as pretty much over, now I see hope and have learned many ways to help myself. GREAT ORGANIZATION

I just wanted to tell you how important your work has been for me. I have been struggling with DM. Your live chat with Dr Chung from Johns Hopkins has been a major factor in my muscle recovery and everyday well-being. Thank you!

This organization has become an important part of my life since I was diagnosed with a disease I never heard of, Dermatomyositis. My Johns Hopkins Rheumatologist told me about it.

I have spent many sleepless nights recognizing the commonality we have in such a diversified world of our disease. There are so many ways to live well and choices we have now due to this group. Keeping abreast is the only way for me to make sure I am headed down my path of life with positivism. Thank you, group!

This group has given me so many new friends who are going through the same symptoms that I have. We all can relate to each other on how we feel, whether it’s happiness, sadness, sick, or depressed. I look forward to logging on and talking with everyone

I am a terribly private person, who is not very good at expressing myself, so social media is not something I normally embrace. This page has been a lifeline during the darkest times in my life. When the doctors don’t listen, don’t know, or don’t care, this page has been an incredible source of information. When friends and family can’t possibly understand, this group of people has been an inspiring source of support. At the very least it is a blessing not to feel so alone.

This group is my go to place. I go here when I’m happy or when I’m sad. I go here to see how my friends are feeling and share in their hope, joy, pain and sorrow. I always find love and support in the light and in the darkness.

This group of wonderful people took me in when was lost and alone and unsure of where to turn with Myositis. They educated me, cared for me and my family. They inspired and supported me and gave me a place to turn in the dark days. They gave me a place to vent when I was down on myself and depressed. They gave me a place to come when I needed to share my accomplishments and cheered me on. There is no way I could repay them for all they have done to give me the spirit to go on. As far as I’m concerned they’re as much of my family as my wife and children. God Bless them all.

I love this group because no one can understand what we are going through except us. When we write negative things, someone out there can relate and it makes the reader know they are not alone. When we write positive things, it gives reader hope. The fact it is online 24/7 and we can connect from all over on our time, in the comfort of our home is priceless. No wasting energy to connect with others. You can sit in your bed and be part of a supportive group. I love this group and have healed a lot through others stories.