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Patient Stories

Butterfly on Ink

I was diagnosed by a thorough ER Doctor. After years of not knowing he took the time to try to figure out what was wrong


I'm a multiple compression warrior, who has MALS, SMAS, NCS, PCS, and MTS. I was the first documented all in one surgery in the States.


I was misdiagnosed with anxiety and an eating disorder. After years of fighting, I found out I had MALS  the whole time.

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I have experienced two open surgeries and multiple stent placements. My story may be complicated but I've been able to overcome the struggle.

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I was incredibly lucky to be diagnosed in the ER. I've always been thankful for the team approach that I experienced during my MALS journey

Submit Your Story

Struggling with rare symptoms and an undiagnosed illness can make you feel horribly lonely, continually misunderstood, and sometimes fill you with deep self-doubt. Even once the MALS diagnosis is confirmed, sadly many patients still feel abandoned by clinicians who don’t understand MALS. By sharing our stories of struggle and victory we can help each other rise above the loneliness and anxiety of the uncertain. We hope you will consider sharing your story—whether you are a patient or the loved one of a patient. All stories are valid.

We will curate stories and post them in our patient stories section of this website—as a source of support and inspiration. Keep in mind that each of us is different and MALS manifests itself in idiosyncratic ways, so no MALS journey is identical. We hope, though, that reading about other journeys will help you with yours.

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