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An Apple a Day

Published: April 17, 2014

Artist, blogger, and social media health activist Jenna Dye Visscher has been painting apples—lots and lots of them.  Why? To draw attention to the most overlooked cause of persistent back pain in young adults—a type of arthritis called Ankylosing Spondylitis (AS) that attacks joints in the backbone and those between the spine and pelvis. Ankles and other parts of the body can also be affected.

“For an entire year, I painted an apple a day to help raise awareness and funds for the Spondylitis Association of America—and just to have fun! Apples symbolize that health and healing are possible despite dealing with a difficult and painful disease,” explains Visscher, who is one of approximately 2.4 million Americans living with AS.

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.

Who is Most at Risk?

The exact cause of Ankylosing Spondylitis (AS) is not yet known. Factors that raise one’s chances of developing AS include:

  • A positive blood test for the HLA-B27 protein
  • A family history of AS
  • A personal history of frequent GI infections
  • Being a male age 17 to 45*

*AS can also occur in women and children, and in older adults.

—Spondylitis Association of America

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.

AS can’t keep Jenna down.  She is a power writer for The Fight Like a Girl Club and WEGOHealth.com, and her daily blog, “The Feeding Edge,” urges people to “Be part of the Story, Be part of the Cure!”


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.

What Might Help?

• Medications: NSAIDS (ibuprofen, naproxen, aspirin), anti-rheumatics (corticosteroids, sulfasalazine, methotrexate), and biologics (Enbrel, Remicade, Humira)

•Daily exercise

•Good posture techniques

•Applying heat to stiff joints and cold to inflamed areas

•Alternative treatments: acupuncture, massage, yoga, implanted TENS unit to block pain signals to brain

— Spondylitis Association of America

    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.

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  • Kelly Johnston

    If corrections can be made, then you should remove the “Who’s at Risk” part that says “Being a Male 17-45″ With a side note that it can affect women and children. REALLY? Your ARTICLE is about a WOMAN with AS. Many many diseases affect more men than women or more women than men, but they do not say only one sex or the other is at risk. AS is an equal opportunist. It affects humans, all ages, both sexes, it does not discriminate. And it is pretty well accepted in the AS community that the only reason on paper it states more men get the disease is because of ignorant drs who think it is a man’s disease and then refuse to diagnose a woman correctly. Too many misdiagnosed under recognized women have this disease. Did you know that Diabetes affects twice as many men as women? But they dont write an article and say only men are at risk, with women as a side note. SO why would it be good reporting to say only men are at risk???? Please change this and instead say “Being between the ages of 17-45 puts a person at risk* *However it can affect children as well.” I believe I speak for every single woman in the AS community who was told their pain was in their head, that they were depressed, that they couldnt possibly have AS because it is a MAN’s Disease. Please DO NOT DISCRIMINATE, and change your Who’s At Risk Section. You owe it to Jenna, who is a WOMAN with AS.

  • Cookie

    I would personally like to thank the Saturday Evening Post for allowing this article to be posted. As a woman who waited thirty two difficult long years to be diagnosed you can’t begin to understand the gratitude in my heart that you would do this. We all work hard to make this invisible disease visible, Thank you for giving us a chance to be heard. Blessings to you all.

  • Elin

    Thank you very much, Kate. We truly appreciate your edit and the work on this article.

    Many thanks,
    Elin

  • Kate Harbourn

    Thank you to Elin and Anna for alerting us to our mistake about chiropractic treatments. We have removed the reference to it as an alternative treatment and appreciate the extra information that you have added.

  • Elin

    Thank you, Saturday Evening Post! This is a beautiful article and we are thrilled to have a story about spondylitis in your wonderful publication. Congratulations, Jenna on your continued success and many accomplishments in the world of health advocacy! You have done an amazing job raising spondylitis awareness with your apples and we are so very proud of you! Job well done!

    A note: If we may offer a correction to the “what might help” section in your article. You mention chiropractic care, which is indeed listed on our website under alternative treatments, please see: http://www.spondylitis.org/about/alternative.aspx
    What we say about chiropractic care on our website, however, is this:

    “Some people with spondylitis swear by regular chiropractic sessions, but doctors do not recommend this treatment for ankylosing spondylitis.

    “Anyone with limited spinal mobility due to [spondylitis] should avoid manipulation of their back or neck by chiropractors and masseurs because it can be dangerous,” claims Dr. Muhammad Asim Khan, rheumatologist, and AS patient. Dr. Khan explains that chiropractic treatments have sometimes inadvertently led to spinal fractures and neurological complications, especially in individuals with fusion (extra bone growth) due to spondylitis.”

    For more information about Ankylosing Spondylitis, please visit our “about AS” page, here – http://www.spondylitis.org/about/as.aspx

    Thank you again to all involved in this article for helping raise awareness for Ankylosing Spondylitis and related diseases

    All my best,
    Elin Aslanyan

    Programs Manger
    Spondylitis Association of America

    PS: Apologies if this is a double post. I’m not sure if my previous comment was received, as I do not see it. Thanks again.

  • Tyler

    Thanks for publishing a good article concerning Ankylosing Spondylitis. I was diagnosed with the disease in 1984, and at that time I felt very isolated, as if I were the only one with this painful and persistent disease. Jenna is a lovely person; I have had the privilege of reading her blog and being involved in some of the awareness campaigns she has been a part of this past year. The only complaint I have about the article, overall, is found in the bulleted section “Who is at Risk”. When raising awareness about AS, it is important to note that there are many women with AS. Identifying men between the ages of 17-45 as being at risk, with only an asterisked note that women and older adults can get it too, is misleading and helps to further perpetuate the erroneous notion that only men suffer from AS. In addition, children are diagnosed with AS too, so it is good to keep in mind that AS is not specific to males between the ages of 17-45; indeed, it can be said that with respect to age and gender, Ankylosing Spondylitis is an “equal opportunity” disease.

  • Jennifer Dye Vissche

    Thank you very much for sharing my story. It is very difficult to live with a disease that causes so much pain and difficulty and that others cannot see because outwardly we look fine. I started this project to try to reach outside of my health community and share what we go through with AS and the related diseases. My hope was to find a way to talk with and reach a larger audience so that people might understand and be helped sooner. I urge people to see a rheumatologist if they experience persistent back pain that lasts longer than 3 months and to know the facts of this disease. The HLA-B27 test is not a conclusive test for having AS. I am in fact negative for the gene as are many others. Also – there are many more women with AS than is generally thought so thinking that mostly men get AS is really not the case. I hope that by sharing my story it may help people be diagnosed and get help and good care sooner. Thank you again. Jenna Visscher

  • Anna West

    Chiropractic treatment is NOT recommended, do to the nature of the spinal growths, chiropractic treatment can cause additional damage.