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.
Antoinette has had many, many tests done, – from MRI, CT Scan, Bone Scan, Skin Biopsy, many, many, many blood tests and urine/biomarker tests. She had an early honeymoon away from symptoms with Enbrel. Unfortunately, that success faded and the inflammation in her SI joint and both hips returned. Since that time she has tried several medications including Actemra, Orencia, Remicade, Humira and is now back to Enbrel. She gets two shots and 16 pills weekly to help her combat AS. Since Antoinette is under 12 years old, she is not a candidate or approved for many of the medications that are targeted for Ankylosing Spondylitis.
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.
Click here to support SAA’s JSpA research, education and awareness initiatives in honor of Antoinette Neu