Here’s Jenna’s story as told to the Post:

For me, AS began suddenly with unexplained pain and fatigue, and it changed my life completely. I was afraid to sleep because of severe stiffness upon waking. Every bump in the road made me wince, and I only ate at restaurants with soft benches or chairs.

And that’s only part of it! When the condition was having its heyday, my eyes became painfully sensitive to light—eye inflammation is another symptom of AS. And I learned to skillfully hide my fingers, elbows, and ears when the AS-related problem called psoriatic arthritis was shredding them apart.

It took six years of searching before I was diagnosed with AS. I had been treated with pain medications and tried physical therapy, but not until I started Remicade therapy to stop inflammation on a cellular level did I regain a measure of my life back.

With each infusion my body seemed to straighten up just a bit and move with more ease. My mind began to clear as the constant pain released some of its grasp. Most importantly, I was showing signs of being me again.

After a few months I was smiling, laughing, and able to contemplate what to do with my life again. The colors I had become unable to see came flooding back and, along with them, I began to feel the pull of my creativity. The change was overwhelming to me.

Again, here’s Jenna:

I am a lover and a fighter, a dreamer and an idealist. I have a painful disease and don’t know what my future holds. AS is not curable, but I will not live in fear of the “what ifs.” I fought hard during years of pain and fatigue before finding a diagnosis and a course of treatment that restored my health and my spark. I choose to fight for awareness of a disease called Spondylitis that affects so many, but is known by so few.

To the newly diagnosed, and to those facing symptoms and still seeking a diagnosis:
• Know that you can lead a good life: it is just going to look different than what you thought.
• Educate yourself about the disease and available treatments, and advocate for the best care possible with your doctors and insurance providers.
• Be strong. The AS journey can and will be extremely difficult. You CAN regain a measure of quality of life. Good care is your responsibility – and no one can do it for you.
• Search out support. Good information is available at the Spondylitis Association of America (spondylitis.org, 1-800-777-8189) and support groups can be a blessing. Check out online support as well. Many people blog or use social media to share their thoughts, feelings, and knowledge about AS.
• Seek acceptance. Denial and anger are inevitable. But when you move past these stages of grieving your old self, work to find a place of acceptance and happiness. Most days will be difficult, but knowing you can absolutely get past them will make you stronger than almost anyone you encounter in life. Be proud and stand tall in that knowledge.
• Dare to dream! I’m taking a vacation after my 365 days of apples. But then I’ll be looking for new outlets for my advocacy and art and perhaps one day found a non-profit that uses art for good causes. Big dreams! But I’ve learned that if you fight past the tough challenges and minor setbacks, dreams can happen.