Niki Fontenot Battles A.S.

Niki Fontenot Battles A.S.

When Niki Fontenot was 22 she first began to notice symptoms of Ankylosing Spondylitis. Over the years, after being told she had less critical afflictions such as tendonitis, she was finally diagnosed with A.S. at age 26, taking after her father who also possessed the T cell, HLA-B27, that lead to his diagnosis of A.S. as well. Since then she has had to forfeit her career and dramatically change her lifestyle to remain healthy and safe.

1. When were you diagnosed and how long have you been living with AS?
I started having aches in my left knee around 22 years old. I’d mention it to my doctor from time to time and he would pass it off as “Tendonitis”. Around age 26 I noticed that my left knee started having thousands of muscle spasms a day for 3 months solid – seriously, it would just seize and have muscle contractions all day as I worked and did my daily routines. I knew this was not normal and asked everyone I knew if they’d experienced anything similar and no one had. Finally after months of spasms, I had my doctor test me for the HLA-B27 gene that my father carries, and I was positive. From there I was referred to a rheumatologist and diagnosed with Ankylosing Spondylitis. After my left knee the tail end of my spine was the next thing to start hurting and then it went on from there.


2. How has it affected your life overall?
A.S. has greatly affected my life, the biggest being my job. At 24, I had my first management job in a very fast paced, well paying industry. I was driven to work hard and outshine everyone. I was on my way up and no one could stop me. Around the same time that my “aches” started getting more severe, my energy levels dropped drastically. I continued to push myself tirelessly, but the job became too much of a strain on my body. I would eventually come home every evening in severe pain, balled up on the couch with a heating pad or ice pack, not moving again until the morning. With things going south at work and my pain levels being so high I fell into a depression and got down to 110 lbs. Finally my family and I came to terms that I needed to slow down and take an easier job. After I changed jobs things very much improved, but my energy levels are still down and I still have to watch everything I do. My daughter is six and does not understand why I am frequently “sick” or why I “hurt” so much. It’s very hard to explain to her, but we take it day by day.

3. Are you still in school? Or work? Either way, how does your disease affect your day to day routine?
Because of my A.S. I have to make sure that I am in a job where I don’t have to ever lift anything, bend over, and can sometimes take “sick days”. Finding this kind of job is not easy and I am experienced in a field for eleven years now that does not support any of those things at all. So I took an easier type of job and make less money because of it, but in the long run I am healthier and happier.

4. Describe yourself. List a few personality traits.
I love to read and write! I enjoy shooting guns. I enjoy walking and nature. I am hoping to one day be able to publish a fiction book or eBook.

5. What are your plans for the future?
My plans for the future are to be a good mother, write and publish a fictional book, and also help raise awareness about AS.

“I feel like Ankylosing Spondylitis has made me stronger, not weaker.”

6. At ANRF, we believe research is the answer. How do you feel about that? Are there any additional things you’d like to see researched or anything you’re excited about?
Early detection is the key. Thankfully for me, I sort of knew what to look for after I realized that something definitely was wrong. My father has A.S. so after my aches and pains started I knew to look into arthritis although my doctor was discouraging it.
My father however, did not know anything about A.S. and sadly went undiagnosed for a very long time. By the time he was able to seek treatment he was past the point of prevention of any kind. People need to understand that A.S. can attack while you are young, and although it is incurable, there are a lot of steps you can take to slow the progression!

Despite having Ankylosing Spondylitis, Niki Fontenot stays strong and says her daughter makes her strong.

7. What keeps you going?
My daughter and the thought that A.S. may be able to slow me down, but it can’t stop me! I am excited to fight against A.S. and help raise awareness. In addition, I also blog to help raise awareness.

8. This is a crucial time in your life as you’re deciding what to do next. How has A.S. played a role in that?
I feel like AS has made me stronger, not weaker. I feel more inspired, more of a drive to push against being weak and giving up. If there is a way to fight, I will do it. I’ve always been a bit of a rebel by nature!

9. How do you manage the pain?
To help with my pain I am on an Immuno Suppressant. I enjoy trying natural remedies and the things that work well for me are Cinnamon capsules, Omega 3-6-9 and Alfalfa pills. All of these are natural and can be found in your local vitamin section. You can take them several times a day as long as you take them with food. They are known to help with inflammation and I feel that they do help with my disease.

10. If you could give a message to others with this, or other autoimmune diseases, what would you say?
My message to others with A.S. or other auto immune diseases is this: Even in your weakest state you can stand up and fight back by raising awareness for the young people of the world. It can start with a blog or a Facebook post. Anything that gets people talking, asking questions, and giving advice.

To share your arthritis story, contact KYLE and let him know you want to spread the word!

Article Author
Arthritis National Research Foundation

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

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