Antoinette is a 10 year old girl suffering from Ankylosing Spondylitis. At just two and a half years old, Antoinette would wake up in the middle of the night screaming and saying bugs were biting her back. She walked with her head forward and her bottom pushed out. She would talk about how her “engine was out” or the “stairs were heavy” and would want to be carried.
Her family started with their pediatrician who sent Antoinette out for bone scan and MRI. The bone scan showed increased uptake but the MRI completed just a week later was normal. This started the year- long process of getting Antoinette diagnosed. Next up were many visits to her rheumatologist. She followed Antoinette closely. At 3 and a half years old, an MRI finally showed proof of what Antoinette was feeling all along, it showed inflammation in her SI joint. She is HLA-B27 positive as well. Antoinette was diagnosed with Juvenile Spondyloarthropathy or JSpA.
She is a patient at both her local Children’s Hospital and also at the National Institute of Health. Antoinette and her family started an organization called Anna’s Angels that raises funds for research in hopes to find a new medication or a cure. She and her family have marched Capitol Hill in Washington DC on many occasions to share her story and the importance of good health care, funding for research and how step therapy is not in a patient’s best interest.
What Antoinette wants you to know about her is that she is stronger than JSpA, she is an incredible advocate for herself and a tremendous singer. She is a nurturer to all she meets and teaches lessons every day about what is really important in life.
In December of 2013, that all changed when I experienced my first bout of costochondritis that led to my diagnosis of AS. Since 2014, I’ve gone through five lumbar surgeries, bilateral carpal tunnel releases, a…
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