Rare Disease Day 2018

Rare Disease Day 2018

Below is the video and transcript of a talk I gave on “the soul of rare disease statistics” at a Rare Disease Day Reception to lawmakers and rare disease families at the Minnesota State Capitol on February 28th, 2018.  I am very thankful to the Minnesota Rare Action Network and the National Organization for Rare Disorders for the opportunity!     95% of rare diseases do NOT have an FDA approved treatment, and 30% of children living with rare disease…

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Rare Stories: Meet Allison

Rare Stories: Meet Allison

  Imagine someone gently pulls on your arm to get your attention. Only, instead of turning to the person, intense pain erupts as your shoulder is pulled out of place from the simple movement. A situation like this is Allison’s reality and is what led to a doctor referring her for a connective tissue disorder evaluation. After five years of fighting symptoms, she received a diagnosis of Ehlers-Danlos Syndrome-Hypermobility type (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia that causes large heart rate spikes upon…

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Rare Stories: Meet Henry

Rare Stories: Meet Henry

Despite only recently celebrating his 5th birthday, Henry already has developed a strong fighter spirit.  This little warrior has Merosin-Deficient Congenital Muscular Dystrophy and lets nothing get in his way.  CMD can be hard to describe to young children,  but his school counselor has written a story about him that they share with his school classes each year to teach the kids. Henry says he usually just tells his friends his name and “that this is my wheelchair.” Most kids…

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A Year of Adapting

A Year of Adapting

2017 highlights: started my blog and sharing my story with the world earned my Bachelor of Science degree in Kinesiology ran two half-marathons with Team Momentum (in May and September) enjoyed spending the summer working at a youth recreation program completed 22 of the 26.2 miles of the Chicago Marathon in October biked 57 miles in my favorite local bike event spent a week volunteering at MDA Summer Camp with my favorite kiddos, for the 7th year in a row…

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Daring Greatly

Daring Greatly

I’ve been at a loss for words to write about my experience with the Chicago Marathon. I’ve written, re-written, and spewed incoherent sentences onto many pages. Nothing felt right. I felt like a failure for not reaching the finish line and I couldn’t find an honest way to write this. I wanted to be okay with the experience and inspire many with a profound piece. I wanted to talk about all the awesome that happened during the race, but forget about…

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Freedom of Adapting

Freedom of Adapting

In 7 days, I am running a marathon. 26.2 miles. My first. An endeavor I have been working towards for months. I’ve been visualizing this finish line for years, and am excited to finally make it happen. When picturing this moment, however, never once was I crossing I finish line in the manner I will be next weekend. I will be crossing the finish line in Chicago with the support of two forearm crutches. And I am okay with this….

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In This Moment

In This Moment

Life has been a whirlwind of activity lately, and since May I’ve: – graduated from college – ran a half-marathon with MDA Team Momentum – moved back to my hometown – spent a week volunteering at MDA Summer Camp – started two new part-time jobs working with youth summer recreation programs. EDS has also been along for the ride on this journey, and caused some excitement of its own in my life.  Since May I’ve also : – used a…

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Pain with a Purpose

Pain with a Purpose

It’s probably no surprise that running is not usually a recommended activity for someone with the frequent injuries and joint issues associated with Ehlers-Danlos Syndrome.  It seems to confuse a lot of people that I can have chronic pain and other EDS symptoms, yet still be able to run.  Since I recently started training for my third half-marathon, I thought this would be a good time to explain why I choose to run despite any extra pain it may bring…

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A Letter to Myself on the Day of Diagnosis

A Letter to Myself on the Day of Diagnosis

Dear little Abbey, I don’t remember when you’ll understand what it means to have Ehlers-Danlos Syndrome, but at age 7 you already know the ways you are different.  Your first knee dislocation was scary, but you didn’t know it wasn’t a normal injury for someone in elementary school.  When you dislocate your knee a second time while coloring on the floor, you are scared.  Even at your age, you know coloring isn’t supposed to hurt.  You’ll be afraid to sleep…

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Finding My Brave

Finding My Brave

This past week I feel as if my bravery has really been put to the test. Due to my recent pain spike, my treatment plan was adjusted and my pain medication was increased to 100mg every 4 hours (or 3x a day) and Tylenol as needed.  My previous dose (100mg 2x/day) did not leave me with many side effects, but this new dose caused a lot problems.  I would take it around 4pm and by 6pm it was difficult to…

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