The story of Anna

My name is Anna, I am 17 years old, and I am considered ‘one in a million.’ 10 years ago, I was diagnosed with Chronic Recurrent Multifocal Osteomyelitis. CRMO, as it’s commonly known, causes the immune system to attack the bones, ultimately causing inflammation and lesions. CRMO can affect any bone in the human body, but it ultimately targets long bones. The disease itself affects one out of one million people. It’s also known as an ‘elimination disease,’ and is usually only diagnosed when all other possibilities are exhausted.
My journey to being diagnosed with CRMO was a journey in itself. A couple of months before first grade ended, my body slowly began to show strange, intermittent symptoms. There would be times when I was unable to stand up straight, unable to keep up with my friends, and unable to walk across the room. Some days I couldn’t get out of bed, walk more than a couple of feet without a wheelchair, or get up the stairs. However, some days I was completely fine. I was given round-the-clock ibuprofen, while my parents jumped from doctor to doctor, searching for an answer they weren’t being given. My symptoms were intermittent, making it harder to come up with a diagnosis. After countless doctors and ER visits, we were urgently referred to the Children’s Hospital of Philadelphia. The doctors there became hyper-aware of the pain I was in and ordered me an MRI. The MRI ended up showing two collapsed vertebrates in my spine, explaining my inability to walk.
The possibility of this being caused by an injury had quickly been ruled out, so a team of doctors came together to work on my case. To them, based on the structure of the affected bone areas, they had two possibilities; CRMO or a form of bone cancer, as they prevent themselves very similarly on the bone. A bone biopsy was then done on my wrist, where they surgically removed a portion of my bone marrow to test for cancer. From there, I was diagnosed with CRMO. That was the moment my life would change forever. The rest of my childhood would be outlined with infusions, treatments, therapies, and hospitals. Initially, I was put on bone-strengthening infusions and Infliximab. I received infusions every month at CHOP, and each would last around four to five hours, so I missed a ton of school. After being on Infliximab for a little over a year, I had an allergic reaction to the drug. I was then switched to adalimumab. My bones had finally started to heal, and my body slowly but surely began to get better.
I was on adalimumab for almost three years when I started to get sick again. I ran a fever for weeks, lost weight, grew pale, and developed large bumps on my shins. We saw my primary to figure out why I was sick, and they sent us to dermatology for the bumps on my shins. From there, we were referred to GI. After having an endoscopy and colonoscopy done, I was diagnosed with Crohn’s Disease. I now had lesions in both my gut and my bones. I was able to stay on adalimumab as it was also used to treat Crohn’s. I was then put on a liquid formula diet to give my stomach a break from solid food to heal. I also needed proper nutrition, as my body was in a prime growth stage and was not absorbing enough nutrients. A complication of Crohn’s in children is the inability to properly absorb food and nutrients. I was losing weight and lacking proper vitamins, so for four months, 90% of my calories came from a protein shake. Alongside the protein shakes, I received iron infusions and was put on Vitamin D pills daily to increase my levels before they dropped too low.
Fast forward two years later, and I was put on ustekinumab. Ustekinumab only targets the gut, so my doctors believed it would treat my Crohn’s quicker and much more efficiently than adalimumab would. There wasn’t enough research done to prove that ustekinumab was effective for CRMO, but my doctors believed my bones were stable enough to switch. It was a risk that my doctors felt was worth taking. I have been on ustekinumab now for three years, going on four.
I always like to say that I grew up with my illnesses and that they helped me grow as a person. However, the reality is, that growing up sick forced me to grow up at a rate no child should ever have to. Growing up as what I like to call a ‘sick kid’ takes an incredible toll on you, especially as you get older. You never realize the effect it has on you until you reach adolescence, and then you begin to feel everything.
I always felt so alone with my illnesses, and I felt that nobody understood what I was going through. For the longest time, I longed for just a single person to talk to who understood what I was going through. I felt so different and distanced from everyone, and it wasn’t until my junior year that these feelings slowly began to dissipate. I ended up meeting a couple of kids I go to school with who all have the same illnesses as me. After meeting them, I was reminded that I’m not in this alone, and I never have been, even if it may have felt that way. Realizing that just one person knows exactly what it feels like and understands what you’re going through can make all the difference. There are always people out there who understand your pain, it’s just a matter of finding them.
The one piece of advice I can give to other sick kids out there is to romanticize and make the most of the life you were given. Advocate for yourself and others, spread awareness, start a fundraiser, and make videos to connect with the world. The most important thing I can say, however, is to never be ashamed of having an illness. Don’t ever feel that you have to hide it from others, which is something I learned the hard way. Authenticity is where you will find the best kind of people. You’ll attract those who respect you and want to support you, and who will ultimately be vulnerable towards you as well. Not everybody will be as accepting as you may want, but the people who refuse to see all of you, ultimately don’t deserve you. At the end of the day, your illnesses do not define you, but they are, and always will be, a part of who you are. They’ve shaped you into who you are today, and you will continue to grow with them. I’ve learned more about myself than I could ever imagine, purely from growing up sick. You’re never done learning about yourself, as self discovery is truly a lifelong endeavor.
Finally, don’t ever feel like giving up is the right option, because it’s not. It never is and it never will be, as much as it may feel like it. Trust me, I’ve been there. Giving up is the easy way out; you’ve already pushed through and accomplished so much, just push a little more. As hard as it may be to believe, the world wants you here for you and all of you. Sometimes it feels like the whole world is against you, especially when you’re consistently sick. I can promise you, it gets better. Take it from a girl who ultimately believed nothing would ever work out for her, and she’d be better off purely not existing. Whether it’s tomorrow, next week, next year, or in the next decade, it will get better. There’s going to be new music to cry your eyes out to, new people to laugh with until your stomach hurts with, new recipes to try and fail with, and new once-in-a-lifetime places to see. Focus on the little things in life while you heal. Pain is only temporary, so hold onto hope and keep your head up. Just stay strong, and don’t ever give up. You’ve got this <3