During Spondylitis Awareness month, Anna visited several Congressmen in DC. She told them about AS and how it makes her back hurt and makes her tired and how she got a skin biopsy to help researchers at NIH. Here are some photos if you want to share. Congressman Jim Jordan tweeted about her visit and put it on his facebook page. Speaker Boehner is going to put an article on his blog (they just contacted us yesterday). She is building awareness! She is working to kick AS!
As a mother of a child with AS, this site helps me understand her better to read through everyone’s experiences. Thank you all for sharing your story.
Here is my daughter’s story…
Anna’s symptoms started when she was two years old. She would wake up screaming in the middle of the night and had random fevers, vomiting and nose bleeds. She said “bugs were biting” her back. She didn’t want to go up or down the stairs. She would randomly lay down during play time. If we tried to walk around the block, she would sit and say she “had no more runs left”.
Anna is 5 now. She tried sulfasalazine with no help. She was on Enbrel for two years, but her inflammation (both in her SI joint and hips) continues and she already has bone erosion in her SI joint. She is now on Orencia. She has a great team of doctors and is also being seen by specialists at the National Institute of Health. We were told she is the youngest confirmed case of AS ever documented. Not something you want to be known for, but we are grateful for the doctors and their wisdom.
Anna continues to smile. She will rarely admit when she is in pain although we can see it. She pushes on and I honestly don’t think she has any memories without pain.
She is a BRAVE fighter and we are very proud of her and will be here to lift her up. Always.
From a proud mother of a Brave AS warrior
Ohio, United States of America