Riding for Rare Disease - Risa Unleashed

My name is Risa and I have Acromegaly.

I was in complete shock in October of 2018 when my Endocrinologist informed me that I had a large tumor on my Pituitary Gland causing a rare disease called Acromegaly.  Acromegaly is a hormonal disorder that develops when your pituitary gland produces too much growth hormone and dumps it into the bloodstream, causing a multitude of symptoms and wreaking havoc on the body.  The long list of possible symptoms include abnormal tissue and bone growth, enlarged organs, and premature death.  Three in one million people are diagnosed with Acromegaly and on average it takes up to 10 years to diagnose.  Approximately only 25,000 people in the US have been diagnosed with Acromegaly.

I went from being an extremely active endurance athlete and outdoor enthusiast, to barely being able to get out of bed.  Many years ago, I began noticing changes in my body and overall health.  I discussed these symptoms with my Primary Care doctor time and time again, pleading for some insight and hoping for solutions.  I didn't feel like I was being listened to and heard.

In 2018, I was at my wits end, and after demanding a brain MRI, the tumor was discovered.  My symptoms had advanced so much by that point that I could not leave the house.  But, I finally had a diagnosis for all of the symptoms I was experiencing for so many years.   

I have spent the year of 2019 recovering from brain surgery, enduring six weeks of radiation treatments, and making excessive trips to the hospital for testing and lab work. This has taken its toll on my body, mind, and spirit.  My life looks different now, with a long road ahead of me and an uncertain future.  

In my efforts to heal, move forward and spread awareness around the rare disease of Acromegaly, I plan to ride my bicycle from Canada to Mexico along the Pacific Coast.  This 1845 mile route will take approximately 6-7 weeks.  I have been unable to train for over a year now and I need to rebuild my fitness.  Therefore, the date I will embark on my journey is September 12th, 2020 and completing my tour on October 22nd, 2020.  
My ride has been postponed to 2021 due to Covid and the fires.  The new dates are September 11th - October 21st, 2021. - In the meantime, I am continuing with my mission of spreading awareness and taking on shorter distanced cycling events. 

My goal is to bring awareness to Acromegaly and its symptoms by sharing what I have experienced and learned.  I will do this by telling my story to all of those who might listen, and more importantly, for those who may need this message. I realize that making the demand for an MRI may have saved my life and because of this, I am continuing to learn to use my voice and I want to inspire and encourage others to use theirs.  I don't want undiagnosed years to go by for others which could cause further complications.  I hope to save precious time and precious lives.

Funds will go toward trip expenses, informational literature, film equipment and editing services, van support, provisions, cycling gear, and newspaper ads.

Every pedal and every person counts!  I am beyond grateful for your support and encouragement!
Learn more about my journey here:  www.risaunleashed.com or HERE and follow me on Facebook and Instagram @risaunleashed

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Organizer

Marisa Heidt 
Organizer
Golden, CO
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