Holly Joiner Weatherbee

January 27, 1967 – January 12, 2022

My name is Holly Joiner Weatherbee.  I am a 45 year old single parent in Sylacauga Alabama .  I have the most understanding and caring kids….a 23 yr old daughter and 16 year old son, as well as a 16 year great-nephew for whom I have custody.    They have been affected by Ankylosing Spondylitis as much as I have and they are my angels!  My extended family and friends have also been supportive in my living with AS but the kids are the ones that do things for me when I can not.

I was diagnosed in 2003 after 25 years of being misdiagnosed.   I have been diagnosed with tendonitis, bursitis, scoliosis, chronic fatigue syndrome to name a few.  I was told that stress was causing the symptoms and was sent to a psychologist.  Finally, I went to an orthopedic doctor because I could barely walk due to hip pain.   He took one look at my Xrays (that day) and said, “You have a spondyloarthropathy.  I am not sure which one, but you definitely have one.  You need to be seen by a rheumatologist.”  He went on to tell me that his college roommate specialized in spondyloarthropathy.  While I was in his office, he called his friend, Dr. Kenneth Saag, and I had an appointment the next week.

Dr. Saag, of UAB’s Kirklin Clinic,  gave me the diagnosis of Ankylosing Spondylitis.  He is a leading researcher of AS in the US.  (How lucky was I?! )He also told me I had the most active and aggressive case he had ever seen in a female.   I was so happy to have a diagnosis!!!

I had no idea what AS was.  I knew no one who had the disease.  I started researching and found www.kickas.org.  I found my answers and support from other “Kickers”.   I needed the support so very much!  I was so grateful that I accepted the position of Chief Admin for the site for a few years.

Later in 2003, I started Enbrel (along with NSAIDS) to manage my AS.  It gave me my life back!  I struggled to obtain the Enbrel due to cost so at times, I had to do without it.

I managed to continue working as an Information Technologies profession, commuting an hour each way, until 2009.  It was no longer possible for me to work. I lost everything I had in the pursuit of getting my social security disability.  Those 18 months were the lowest months of my life.   I had absolutely no income, no car and lived in a house with no kitchen.   I hated seeing my son suffer.  I lost my mom earlier that year.  My AS became really active and without meds, I lost teeth with no insurance or money.  If not for my family and friends, we would have been homeless and hungry.

I was finally approved for the disability.  I am very grateful but it is tough to maintain a home  for myself and the boys.  But some money is way better than NO money.  J  The Encourage Foundation allows me to receive the Enbrel for free.  I just finished my first month so I am feeling better!!  I may look like a question mark due to my kyphosis but I don’t feel like a pretzel right now.  J

I refuse to let AS rule my life.  I will always be an AS Kicker!!  I hope that as people are becoming aware of Ankylosing Spondylitis, people will get diagnosed sooner, that more effective and affordable drugs are discovered and that a cure for this disease is found in my life time.

Now, let’s go Kick some AS!!!!

Alabama United States of America

One Response to “Holly Joiner Weatherbee”

  1. Dear Holly,
    Thank you so much for sharing your story ith us.
    Sincerely Cookie

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