Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
By Donnie Hogan
Tuesday, October 30, 2018
Donald Ray Hogan, aka Donnie, is a fellow patient of ankylosing spondylitis. He always felt pain growing up as a child and it continued well into his 20’s, during the time when he was training with fellow MMA fighters in hopes to go professional. At the time we were unaware of ankylosing spondylitis and thought his pain was normal for a young MMA fighter. Little did we know ankylosing spondylitis had been already deteriorating his body for years.
What most don't know is Donnie is Anna Nicole Smith’s younger brother (they are half siblings on their father’s side.) They were reunited in 1993, during when Anna was named the new Guess Jeans Model and playmate of the year. Growing up he never really understood the pain Anna was feeling and going through, but he personally witnessed it. When she overdosed, the stigma and media circus surrounding her death was overwhelming. Everyone knew she had chronic pain, but no one ever fought to find out why. This is something we live with every day. If only our family received the HLA-B27gene marker test sooner, we would have had a better understanding of Nicole’s pain and possible condition. We never really grasped how much pain she was in until Donnie felt the pain for himself.
Their father also spoke of severe chronic pain that was ongoing and unexplained. Shortly after they lost their father, Donnie began to feel his own symptoms worsen. It was then that he began to piece the puzzle together. There was something causing extreme pain in our family and we needed to find out what it was. Donnie’s pain worsened, and he began having mobility issues and could no longer sleep without waking up with agonizing pain. We went from one doctor to another and no one could find anything wrong with him, as all the routine screening tests would come back normal. It was not until Donnie was finally screened for HLA-B27, and it was confirmed that his family carried the gene signifying the increased risk of ankylosing spondylitis, that the diagnosis would come. He has suffered seizures in later years and the doctor states his disease is multi-systematic. His entire body is affected by this disease and we have not found effective treatment options for him.
He has a service dog named Sonya who aids with a plethora of things such as alerting us on things like raised heart rate and seizure alerts and providing mobility assistance. Sonya has been a lifesaver when it comes to assisting Donnie with his daily struggles. Sonya also alerts us when his vitamins deplete, which has been an issue for Donnie along with keeping any weight on. Without effective treatment, AS can be very difficult and challenging.
We have fought for years to find a suitable treatment plan for him. He was officially diagnosed with ankylosing spondylitis and was granted 100 percent disability by Social Security in 2008. To this day he has been unable to receive any treatments such as biologics or methotrexate due to his body rejecting them, which has caused a relentless amount of damage to his body.
Donnie’s favorite band is Motley Crue. Vince Neil and Mick Mars have both been a blessing to our family. We have seen the Crue in concert many times and have witnessed the changes Mick has endured himself due to AS. He has been battling this disease for years and we applaud his strength. Looking back on what we knew of AS back in the 90’s to now we see how far we’ve come. We must continue to fight for those who are struggling, even when we struggle ourselves. If we don't fight for others who are hurting, then who will? It’s a long ride until we finally reach our "Home Sweet Home."
We continue to pray for funding into more research and hope one day we will see it go further nationally and publicly. We pray that ankylosing spondylitis becomes as well-known as RA and those in pain don't have to wait years to receive help. This includes our twin sons, Donnie Ray and Danny Ray.
On a side note, this year, Donnie was listed as the top 50 advocates for the 2018 International Pain Foundation for Chronic Pain. He was also a finalist for the 2018 iPain Hero of Hope awards. iPain Foundation presents the Chronic Pain Advocacy Award to a pain patient who has demonstrated outstanding commitment to assisting and advocating for people with neuropathy and pain conditions. This could be within the field of research, education, awareness, or patient assistance. We try to advocate even when we feel like giving up would be easier. We do outreach in hopes that it will raise awareness. We live everyday knowing that things would have been very different for many of our family members if we had known about this disease early on and there was effective treatment Donnie could tolerate.
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