Support Lindsay's Battle with Dermatomyositis

My name is Lindsay Guentzel and I am asking for your help. A year and a half ago I was diagnosed with a rare and incurable autoimmune disease called Dermatomyositis – especially rare for someone my age.

The easy way to explain it to you is like this: my immune system is attacking my muscles, causing inflammation, weakness and deterioration. The more advanced explanation? I have a complex, multi-system disease that affects my muscles, skin, lungs, liver, joints and eyes that has and will continue to dramatically affect my life.

Here’s the thing, I’m 38 years-old and I look healthy to the majority of people. Most people even compliment me on how good I look, having lost a lot of weight from the disease and all the medications I’ve taken over the last year and a half.

Before I got sick I was a marathon runner who got excited about doing burpees and planks during group fitness classes at the gym. Now when I go out, I need to park in accessible spots to limit how far I walk. I’ve had to bring a cane in busy public spaces to keep my balance and have needed to use a mobility scooter at the grocery store or Target. Even though I’ve experienced significant muscle loss causing mobility challenges and chronic pain, these complications are not always visible to those around me. On top of all the physical problems I’ve had, I’m also dealing with the feeling of being unworthy of help because I don’t "look sick."

Although experimental therapies and off-label medications exist, nothing has seemed to work for me yet. My care team measures the Creatine Kinase levels in my blood weekly to track muscle breakdown in my body. The normal CK range for women is 30 to 145. Mine fluctuate from week to week but are usually between 5,000-10,000 and have even been as high as 21,000. My rheumatologist believes this is an extremely unique case.

I always wanted to be special...

So why am I asking for help now? As you can imagine, managing the costs of everyday living expenses and a rare, chronic illness can be overwhelming. Combine that with the schedule I’ve had to keep – more than 280 visits since January 2023 that doesn’t include the 24 days I spent in the hospital – and it’s just gotten to be too much for me to handle. My doctors tell me I need to slow down. And I’ve come to realize that in order to slow down I need to ask for help.

Most days, I struggle to recognize myself. It has affected every aspect of my life and I’m often overwhelmed with the grief of losing myself and everything I’ve worked so hard for. So much has been put on hold, including my career. But despite all that’s working against me, I’m holding onto as much hope as possible that I can get my symptoms under control and work towards living the life I want and deserve.

Thank you for being there for me on this journey, I’m so appreciative of your support. Your kindness and generosity helps me stay positive and gives me the stability necessary for my body to rest and heal.

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Ways You Can Help

GIVE what you can. No donation is too small.

SHARE on social media (Tag me @lindsayguentzel).

EMAIL this page - www.gofundme.com/support-lindsay-guentzels-battle-with-dermatomyositis - to your family & friends.

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With love and gratitude,

Lindsay

Read more about my journey here.