September 1, 2020
Aledade team member Jen Fahringer recently took a few moments to tell us the story of her health care journey over the past six years and why it motivates the work she does every day here at Aledade. As Chiari Malformation Awareness Month starts today, Jen wanted to share her story to inspire others, raise awareness, and help us all remember our why.
To learn more about how the team at Aledade is drawn by so many different paths to the same mission, visit our People Team page.
One Friday in August, I started the morning at the beach. It was my morning walk, and I used it to reflect on how far I had come in the past six years.
Six years ago, that same morning, I was getting ready to undergo brain surgery. It was a procedure to alleviate the symptoms of Chiari Malformation, a serious neurological disorder. Chiari Malformation happens when the cerebellum, located at the bottom of the brain, extends out of the skull and begins putting pressure on the spinal cord and the brain. It causes a number of challenging symptoms. For me, before the surgery, the pressure on my brain stem was making it hard to walk.
So that morning I appreciated every step as I walked on the beach. I could walk. I could keep my balance. My legs didn’t give out. These simple moments meant so much.
That’s not to say the surgery was easy. Today, I still have some residual effects. Nerve damage to my head and neck, which sometimes causes muscle spasms. But it’s nothing compared to the constant headaches, the loss of balance, and all the other problems I had before the surgery. It was a tough journey, but I’m so thankful I took those steps forward.
September is Chiari Malformation Awareness Month. It’s a chance to recognize the estimated 300,000 Americans who have been diagnosed with Chiari and experience symptoms. Many patients experience symptoms without a proper diagnosis. The American Association of Neurological Surgeons estimates that more than 10,000 Americans have a Chiari surgery like I did, each year. You can learn more by visiting bobbyjonescsf.org and conquerchiari.org, two organizations that support awareness, research, and education for Chiari Malformation and related conditions.
For me, that morning was also a moment to recognize why I do the work I do here at Aledade. I'm passionate about transforming health care, especially primary care because I know how painful it is when you need a health care system that isn’t designed to keep patients healthy. For almost 20 years, I suffered in that kind of system. Doctors failed to take my symptoms seriously. By the time they did, they didn’t communicate with my primary care provider. And they didn’t connect the dots in my care until it was almost too late. I was lucky.
At times this work can be challenging, and frustrating. More so when the nation is ravaged by a global pandemic. Even in the best of times, it can be hard to see the full impact of what we’re doing to fix American health care.
But the walk I took on that beach reminded me that it’s worth it. We must keep going. The work that we do here at Aledade to support primary care professionals will touch a patient, just like me. It’ll make a difference.
One of our doctors will use the tools we provide through the Aledade app and our practice transformation teams to take a close look at their patients. They might see one patient who’s seeing many specialists and making frequent visits to the emergency department. They might see the diagnosis that’s associated to those visits. They might have the opportunity to connect the dots and intervene before it’s too late. And they might reach out just in time to a patient who is too afraid or too discouraged to raise the issue on their own.
Maybe, just maybe, that patient will also be able to take a walk – on the soft sand with the waves rolling in beside them and the sun rising over the water – just like I did on this August morning.
Aledade has given me the chance to share my story with the providers and staff we work with, as an illustration of what value-based care can mean. It’s a chance to educate, spread awareness, and let others know what drew me to this work. Today, on Chiari Malformation Awareness Month, I wanted to share all of that with you.
I’m so thankful to have the chance to work for a company where I can share my story and my experience without being afraid or ashamed. I’m thankful to spread the word about why this work – this mission – to empower primary care is so important. My challenge to you, as you read my story, is to ask yourself this one question: Why is transforming health care important to you? When you have the answer, hold on to it, remember it. If you’re comfortable, share it with others. The next time that things get tough – and in trying to transform our broken health care system, they will get tough – remember that reason, and keep pushing.
Because together – Aledade staff, primary care doctors and staff, and all of the partners we work with across the health care industry – our collective force will make a difference.