Myositis Empower Walk Newsletter – Edition 1
The Myositis Empower Walk was created to help empower and strengthen the myositis community that Myositis Support and Understanding has already built. To show our support for our warriors and to remind them that we are always standing with them through their journey. Although our paths crossed with MSU for an unfortunate reason, the passing of our Dad, we are thankful to have had the support and resources that MSU offered during our time of grieving. And if it wasn’t for our supporters, we wouldn’t have been able to pull off two successful events. We want our warriors and caregivers to know that we do this for them – to expand on MSU’s inclusive and safe community, to bring more awareness to all forms of myositis, to raise funds and spirits.
We’d love to introduce you to three strong and empowering Myositis Warriors that we’ve been so fortunate to meet because of the Myositis Empower Walk. We’ll hear about their journey with myositis, their thoughts on the Myositis Empower Walk, and uplifting messages to other warriors.
Meet Angela
Angela was born and raised in Southern California and later moved to Salt Lake City, UT in 1996. After six months of being misdiagnosed with Rheumatoid Arthritis in 2012, she longed for answers. It wasn’t until she developed a heliotrope rash that covered her eyelids and resulted in a muscle biopsy that she was finally diagnosed with Dermatomyositis (DM). This started her journey of searching for others who can relate to what she was going through or at least understand this rare disease that many doctors don’t understand themselves.
Her move in 2018 to Henderson, NV allowed her to meet with not only the Landman Family but the Vice President of MSU, Lynn Wilson. These experiences made her feel extremely lucky and validated that her move was all for a reason.
Why is the Myositis Empower Walk important to you?
The Myositis Empower Walk brings awareness to the myositis community and allows us to be heard in unity. It brings all warriors together to feel a part of something and that we can help by supporting one another and sending in donations. It shows us that we are not alone in this fight and that hope still exists.
What did it mean to you to be able to personally connect with Lynn Wilson, VP of MSU at the 1st Annual Myositis Empower Walk?
Last year’s walk provided me the opportunity to meet Lynn Wilson. For those of you who know who she is, it took me to the moon and back to connect with SOMEONE with DM. Since day one of our myositis journey, we search for others who are like us, who can understand without hesitation – someone who can look at you and know the struggle you are going through. Although it was a brief meeting, I left that day with such emotion. I knew that if I ever needed to reach out, I could always rely on her. I always brag that I met Lynn.
What was your favorite part about the 2nd Annual Myositis Empower Walk?
There are too many favorite parts of this year’s walk. It was awesome that it went virtual because I know how important it is to want to feel included and want to do something for our cause. It was great to not only reunite with the Landman Family but to see how many supporters there are and to get to meet them too. It was so exciting to see that the Myositis Empower Walk is getting bigger each year.
The Myositis Empower Walk is hosted in Henderson, NV. Since you are local to the area, how does it make you feel to have that support so close to you?
It feels so uplifting to be able to attend the Myositis Empower Walk in person. It is not only an exciting day, but it’s FREE to attend. It allows me to feel involved and not at all alone. Having a rare disease is difficult, lonely and scary but for that one day of the year, we all come together. I can’t recommend it more to those of you in surrounding states to try to attend the event. Those of you who can’t make it to the yearly conferences due to funds, this enables us to come together and SHOUT OUT that there is HOPE and that WE’VE GOT THIS!
We are so thankful that the Myositis Empower Walk not only introduced us to Angela but created a safe space for her to feel heard and supported. Who knew that we’d meet someone diagnosed with DM, just like our father, the first year of the walk. The emotions that came over us the day she showed up to our 1st Annual event is unexplainable. We’ve always thought that if our efforts only affected one person, then we have done our job. Angela is one of the reminders of why we are so passionate about MSU, to help create a space and an event that allows our warriors to feel heard and seen! Thank you Angela for your constant cheeriness and support of the Myositis Empower Walk!
Learn about Holly
Holly Jones is 36 years old and lives in Houston, TX. She is the creator of the Facebook support group, HERstory In Color, a platform used to showcase the stories of women of color suffering from invisible disease. She is currently in her 17th year of diagnosis with Polymyositis (PM) and Interstitial Lung Disease (ILD). Being diagnosed at such a young age, Holly didn’t know what the future had in store for her. For so long, she wanted to be ‘normal’. She then realized that being normal is boring! Begin rare, complex and undefined is much more interesting because this disease is not given to the weakest or the strongest of persons. It’s given to the ones that walk the fine line of both and it leaves people to be inspired because they don’t know how we make surviving look. this. good.
How does the Myositis Empower Walk make you feel?
Some say it’s all in a name… and in this case, that’s exactly what it is. The Myositis Empower Walk makes you feel empowered enough to speak up and speak out loudly about how a rare disease has changed your life and changed the lives of the people closest to you. This walk helps you create new friendships with people that understand you on a physical, emotional, and spiritual level. So… it makes me feel like I have a voice, and that I am loved and supported.
How does the Myositis Empower Walk align with your personal mission to bring more awareness for yourself and other myositis warriors?
As a woman of color, past statistics have drawn an ugly prognosis for us. We are too strong and beautiful for those numbers. My personal mission is to bring awareness to my community and change the narrative.
- Seek medical care for anything that doesn’t feel right with your body. Our health is just as important as any other race. We no longer have to work through pain. There are programs and assistance everywhere that can help you get the proper care and treatment you need.
- I want people and doctors to realize that this is a young person’s disease. Doctors need to learn how to identify signs for young adults and signs in people of color with Dermatomyositis.
- We have to recognize mental health and depression. Doctors should highly recommend therapy for their patients and caregivers. With Myositis everyone goes through a suffering and grieving process that eventually sets in a state of fear and resentment that never goes away. Having these emotions can cause someone to breakdown if they don’t have a good support system.
For someone who doesn’t have myositis or any affiliation with MSU, how would you suggest they become involved?
Word of mouth and storytelling is my preferred method of getting people involved. This can be person to person or through social media. This may sound weird but I look at it in a biblical way. You didn’t know about God until someone told you. When they told you, it made you want to research for yourself, by reading the stories of the Bible and listening to people tell their stories about him. Once you looked back over your life and the lives of others and seen him implanted in the stories, it makes you want to go a tell the world about what you have learned, what you have seen, what you have heard. To be involved with spreading the gospel. Educating and telling our personal stories will create an empathic emotion to get others to become involved. Because everyone knows someone that has suffered from an illness.
Although we haven’t met Holly Jones in person, we are excited for the time we will be able to. We connected with Holly through social media. Her passion shines through brighter than ever and we are so honored to know her. If you haven’t already, go check out her Facebook Support Group, HERstory In Color.
Connect with Ashley
Ashley was recently diagnosed with Dermatomyositis (DM) early this year at the young age of 29, after about 8 years of misdiagnoses. Although it has been a difficult path, she is fortunate to have her family and friends supporting her along the way.
What words of encouragement would you say to fellow myositis warriors who are interested in participating in next year’s walk?
As of right now, I am so fortunate to be able to run and walk, so I incorporated the Empower Walk into my morning run – something I know is not possible for some of my fellow myositis warriors. Being diagnosed with a rare disease is really difficult and as we all know, it is so powerful to be able to rally with others who know how devastating myositis diseases can be. We need to feel seen and supported while living with these diseases, but we can only be seen if we make some noise. The empower walk is that noise – so I encourage you to participate, even if that means getting a loved one to walk on your behalf. We are stronger and more visible together.
How did you get your friends and family involved in this year’s walk?
For me, it has been years of being sick, having flare-ups, and not having any answers. I was finally diagnosed in April of 2020, and though I didn’t want to be told I have a rare autoimmune disease at age 29, it was nice for me and my loved ones to know why I had a heliotrope rash that looks like crazy eyeshadow! With that said, it didn’t take much convincing to have my incredible family and friends join me, donate money, make signs, and buy shirts to support an organization that seeks to support those of us living with myositis diseases. My loved ones were so enthusiastic about bringing visibility to these diseases and supporting the organization that has given us support and answers throughout my diagnosis!
What would you like to see for next year’s walk?
For next year, I would love to see the numbers keep growing, from money donated, to people participating! These diseases are the last ones doctors tend to think about because they are taught “when you hear hoofbeats, think horses – not zebras,” and myositis diseases are the zebras! If we create noise and awareness, hopefully, more medical professionals will remember to consider myositis!
We are so grateful to have met Ashley through social media. She is an incredibly strong young woman and we want her to know that we are with her every step of the way. The support her family has shown for her is inspiring.
We’d like to thank you for all of your support and for following us along on our journey. We couldn’t do this without you and from the bottom of our hearts, thank you! And to our warriors, we are so grateful to be welcomed into this community with open arms to share our Dad’s story. We will continue to fight for you and with you. You are not alone!
The Landman Family
Learn more about the Myositis Empower Walk.
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