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Autoimmune advocate: My reason for being

Have you ever had one of those dreams where you’re trying as hard as you can to run away but you can’t seem to break out of slow motion or are simply stuck in your tracks? I have. Except for me, it wasn’t a dream – it was my life.

 

Five years ago, after an onslaught of testing and doctor’s visits, I was diagnosed with psoriatic arthritis, an autoimmune disease that resulted in total body arthritis and paralyzing pain that made even the slightest movement excruciating. I was indefinitely unable to break out of slow motion. The diagnosis turned my life upside down. Every day was a battle against my joints, fatigue and my self-confidence.

 

Five months after my diagnosis, I was in and out of the ER three times over the course of one weekend with stomach pain that made even drinking water unbearable. While many of the doctors were convinced it was all in my head (even though I was on 90 milligrams of morphine and it didn’t even come close to taking away the pain), a camera study proved otherwise when bleeding ulcers were discovered in my small intestine. It was at this point I was diagnosed with yet another autoimmune disorder: Crohn’s disease

 

At the ripe age of 19 I had received back-to-back diagnoses of serious, life-long chronic illnesses. I endured countless failed treatments, debilitating fatigue, strained relationships and more pain than I could have ever imagined. But I am now blessed to have just celebrated three years of remission because of the life-saving therapy I receive every two months -- therapy that treats the symptoms of both my autoimmune diseases. I now live a relatively “normal” life and I couldn’t be more thankful.

 

I firmly believe that everything happens for a reason.

 

While my autoimmune diseases caused me to endure the most difficult trials of my life, I am still thankful for them. Why? Because they gave me a purpose. It is my life’s mission to support autoimmune patients as they march through their journey.

 

There are 50 million Americans battling more than 100 autoimmune diseases, from Crohn’s and arthritis to lupus, celiac, and type 1 diabetes. As a society, we tend to recognize autoimmune diseases individually. We must begin to view these diseases as an umbrella category like we do cancer and heart disease to ignite change, raise awareness and catalyze research. As the root cause of these illnesses is one in the same, a treatment for one has the potential to mean a treatment for many. 

 

My autoimmune diseases have shaped the course of my life ultimately for the better. And I hope my story will raise much needed awareness for autoimmune diseases and inspire fellow patients to draw strength from adversity and remember that everything happens for a reason. 

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.

 

Lilly Stairs is the head of patient advocacy at Clara, a web and mobile platform working to empower patients by connecting them to clinical trials with breakthrough treatment options. She serves as a board member for the American Autoimmune Related Diseases Association (AARDA) and is also a motivational speaker inspiring others to make a difference in the world.

Photo by jeremiasss

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