Diagnosed with juvenile arthritis at 20 months old, uveitis at seven years old, and Crohn's disease at eight years old, Abby Ferraro had spent more days with pain than without in her first eight years of life. In fact, she was so used to being in pain, that she wasn't even registering it as pain any more. Even on her bad days, Abby was optimistic and joyful. She knew that tomorrow would be a better day and that everyone has something to overcome in life.
One day, Abby woke up pain-free. She realized that all the times she thought she was feeling good, she still had pain and nausea...until now. Now that she was feeling great, she was so overjoyed that she didn't know what to do with herself. She always had a lot to say and has NEVER won the quiet game, but she had even more to say than normal and found herself wanting to tell her story. She sat down at an old Surface, started typing, and became an author at eight years old.
Abby’s joy comes through in her detailed description of living with juvenile idiopathic arthritis, uveitis, and Crohn's disease. Abby discusses her road to each diagnosis, what she has learned, and how chronic disease has impacted her life. Get your copy on Amazon
"I have a daughter the same age who also struggles with JIA. It is fabulous that Abby took the time to write a book about her experience. Often families feel isolated after diagnoses such as Abby's, and their children also feel that isolation. Abby's Story helps kids see that they are not alone, and her journey might help paint a picture of hope for kids early in their diagnosis. This family demonstrates perseverance and shows what true advocates look like."
"Love the way this book is written, first hand from the view of a child who has been through it! Gives great perspective on how Abby, her parents, and her doctors dealt with her symptoms, testing, treatments and much much more! Easy to read for a young child yet gives enough info for an adult seeking some guidance!"
"We absolutely love this book! It’s written by a young girl who is very brave and tells her story so well from a her own perspective! We absolutely think it’s awesome to have a book written by a child for another child to make their disease or illness relatable."
Abby has been the face of arthritis since 2011. Her knee became swollen when she was 19 months old. It hurt to walk and crawl, and she woke up at night crying in pain. The diagnosis took 4 weeks, 11 x-rays, 9 vials of blood, 2 blood cultures, 6 visits to 3 different doctors and the CHOP emergency room, and 3 weeks of antibiotics to rule out Lyme disease. She was diagnosed with juvenile arthritis in her right knee, ankle, and pinky toe. In addition to attacking her joints, it attacked the muscles in her right leg. She changed from a non-stop talking/singing girl that always ran around to a quiet, reserved girl that always wanted to be carried.
She started on prescription NSAIDs immediately, had a procedure where they removed the fluid from her knee and gave her a steroid injection, and started physical therapy twice a week. There was a lot of improvement, but she still had active arthritis and pain. Her weekly trips to grandparents or the zoo were traded for twice weekly therapy sessions, 4hr round trip visits to the rheumatologist every 6 weeks, and eye exams every 3mos. After several months, she was switched to a stronger NSAID. It tasted awful, but she took it because at 24 months old, she already understood that it made her pain a little better. The symptoms and pain continued. By this point, she didn’t remember ever not being in pain. she accepted that constant pain was normal. The arthritis remained active, and the doctor wanted her to start on methotrexate (low dose chemotherapy medication). Then suddenly, her arthritis became inactive. The doctor was optimistic, but stressed that she could flare at any time and that she's never out of the woods. She had to continue physical therapy twice a week for another 5 months in order to rebuild her right leg muscles.
She had several minor flares throughout the years. Plus, in September 2017, she developed uveitis. In June 2018, after three years of GI symptoms, she was diagnosed with Crohn's disease and was no longer able to take the NSAIDS that were controlling her juvenile arthritis. In August 2018, when her Crohn's, uveitis, and juvenile arthritis were all flaring, the doctors decided it would be best for her to start a biologic. The biologic helped her feel better than she had in years. Only then did she realize that prior to the medicine, she had always had a level of pain and nausea that she thought was normal.
She still has bad days, but they aren't as bad as they had been. She also has days that are truly pain and nausea free. The longer she is on the medicine, the better she should feel. There is no cure, but we are optimistic that she will achieve remission soon.
Abby has been very fortunate. She has relatively mild versions of all of her conditions and seems to have found her right treatment. She has many friends who struggle with more severe symptoms or who are still trying to find the medicine that will get their diseases under control. Abby hopes her book brings awareness for all of her fellow warriors and gives them hope that tomorrow will be a better day.
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