By Kristine DiDesidero, Mount Sinai, New York
I remember the pain as a child. I complained to my mom about pain in my legs. Some nights I cried myself to sleep. My mom took me everywhere for answers. The doctors told her I had growing pains. I am 4 feet, 11 inches, and stopped growing in fifth grade. The reality is that I’ve spent most of my life with what I now know as a variety of autoimmune diseases.At 24, recently married, I became ill and was hospitalized. The doctors said they thought Ihad fibromyalgia. Over the years, I’ve also battled Sjogren’s syndrome, ankylosing spondylitis and rheumatoid arthritis. These diseases have caused irreversible damage and progressively diminished my ability to do basic tasks.
Today, I’m also dealing with autoimmune hepatitis, which must be monitored almost daily. It’s related to my liver failing last year, caused by an infusion I was taking for arthritis. Step therapy protocols required me to try that medication first, instead of what my doctor originally prescribed, and I almost lost my life.
But none of this will stop me. Though I’ve suffered personally from these conditions, I’m also witnessing my son, Lorenzo, confront some of the same challenges.
Lorenzo is our first born, and as first-time parents, my husband and I were thrilled with this perfect little angel who came into our world. He was a preemie and was delayed in milestones like crawling and walking. But by the time Lorenzo was 7 years old, he had caught up to his peers and excelled in most things. He loved school, reading, art and playing with friends. He was especially fond of his younger brother, Orlando. Then everything changed in 2009.
Pain Every Day
During a family vacation, Lorenzo said his swollen knees and feet were bothering him, so we had to push him around in a stroller. Soon after, at his Little League game, he struggled to play, and at the end limped off the field. On the way home, my husband and I asked what happened. “I just have more pain today than usual,” he said. Do you have pain often? we asked. And he replied, “Yes, almost every day, don’t you?”
Our son has pain every day.How could that be? I’m his mom. I would know he was in pain, right? Well, at age 7, Lorenzo had adapted his thinking to believe what he was experiencing was normal, just like I did as a child.
During the next three years, we had numerous doctor visits and so many tests. Lorenzo spent fourth grade in a wheelchair. No answers or diagnosis. He would get better, then worse. Some thought he was faking it; others said it was growing pains. That’s when I had had enough. My mom and I heard the same thing as I grew up.
I was determined to get an answer for our son, and after consulting two pediatric rheumatologists, it was confirmed that Lorenzo has juvenile arthritis. It swells his knees and ankles, keeps him from walking and inflicts constant pain and stiffness.
That’s when the Arthritis Foundation came into our lives. We learned that JA affects hundreds of thousands of families like ours, even though it’s not a well-known disease, which comes in many different forms. We learned that medications have been developed to reduce pain and slow or stop inflammation and joint damage. And we learned there’s no cure.Our hearts sank.
Finding Help and Hope
While they couldn’t cure Lorenzo’s arthritis, the Arthritis Foundation offered us help and gave us hope. I’ll never forget picking my son up after his first summer at the Foundation’sJA camp看到他脸上灿烂的笑容。Then our family attended the Foundation’s全国农协会议。We felt we were no longer alone, and that made all the difference.
Lorenzo has tried and failed numerous medications over the past five years. Like me, he was forced to follow step therapy protocols. He wasn’t improving, and his condition deteriorated. Two summers ago, on most days his dad and I had to feed him and help him get dressed. Lorenzo had to rely on a wheelchair, or his walker or cane, to get around. He missed months of school, and his lower spine is permanently damaged.
“这不是童年，”洛伦佐告诉我。他说有些日子过得糟透了，他有时会生气。他说:“我真的很讨厌无所事事的感觉，不做任何事情来推动自己成为这个世界的一部分。”“当我这样做的时候我会更快乐，但有时我对自己要求太高了。”洛伦佐渴望变得更强大、更满足，尽自己的一份力量来塑造一个每个人都有自己位置的世界。他对那些和他一样遭遇逆境的人说:“不要放弃。不要低估你自己。过最好的生活。”
My favorite moments with Lorenzo are when we talk about books or current events. Both of us love libraries and museums. We can talk for hours about those. We bond not just because of what we’ve gone through in our similar journeys, but just by living and enjoying everyday life like everyone else does.
像我一样，有其母必有其子，现年17岁的洛伦佐正准备上大学，她是不可阻挡的。我们分享我们的故事来激励和教育他人。Weadvocate and fight for everyone impacted by arthritis.We’ve participated in the Arthritis Foundation’s Advocacy Summit; Lorenzo was teen honoree for the Long Island Jingle Bell Run fundraiser; and he spoke at the Foundation’s Commitment for a Cure gala, which raised nearly $1 million to fund arthritis research. I’m among eight New York State Platinum Ambassadors who speak out for our family and all others affected by a chronic illness like JA and other forms of arthritis.
关节炎基金会和我们的JA家庭激发了我和我儿子的力量和韧性。如果你开始了与JA的旅程，我们有很多人会在这里帮助你。
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2020年3月18日是世界青少年关节炎日。在这个日子里，我们照亮了JA——提高了对一组大多数人都不知道的复杂的儿童风湿病的认识。Besides affecting joints,juvenile arthritiscan also affect the heart, lungs, eyes, skin and muscles. And it often leads toemotional, school and social issues.
The Arthritis Foundation makes JA one of our top priorities, supporting life-changing research and resources — and bringing the JA community together. In many places, there arelocal support groups to meet other JA families in person. Or you can connect with other parents and caregivers in theLive Yes! Online Community. You can also reach out to a licensed social worker at the Foundation’s Helpline bysubmitting a questionor calling 844-571-HELP (4357).
Be part of the solution by giving a generous gift today.