Herd to Heard: How a Dairy Farmer Advocated for a Correct Diagnosis

As someone living on a small dairy farm with my family, my life can get pretty busy. Walks, feeding times and vet visits are all a part of the job. I spend a lot of time with veterinarians discussing my animals’ health. For example, if my dairy cow cannot get up and presents with cold ears and sweet-smelling breath, I know I need to take her to the vet quickly to get treated for her ketoacidosis. This has taught me the importance of speaking up when something is wrong, not just during vet appointments but also when it comes to my own health.

I wasn’t as used to applying this logic to my own health, but in 2005, I started experiencing blurred vision. I visited an ophthalmologist who initially thought I was just overstressing my eye. After realizing there could be something else going on, the doctor directed me to a neurologist who diagnosed me with multiple sclerosis (MS). I was on different MS treatments for years, yet I was still consistently in pain and my doctors were not willing to alter my medications.

Nearly seven years after receiving my MS diagnosis, I lost feeling on one side of my body while I was working in the field and had to go to the hospital. I looked at my neurologist and asked him to run more lab tests because I knew something else was wrong with me. A blood test for the anti-aquaporin-4 (AQP4) antibody confirmed my neuromyelitis optica spectrum disorder (NMOSD) diagnosis. Doctors had told me that I was way too young to have NMOSD and that it was all in my head, but I trusted that I knew my health better than anyone else. I did my own research and got in contact with The Guthy-Jackson Charitable Foundation, who shared information with me about NMOSD. If I didn’t ask for that blood test, I don’t know if I’d still be waiting for a correct diagnosis or severely disabled from my unknown illness.

Diving Into Research and Cultivating a Support System

Once I discovered I had NMOSD, I kept doing my own research. I read medical dictionaries, journal articles and stories from advocacy groups and on social media. Having as much information as possible helps me advocate for myself and not be afraid of the future.

If you’re also living with NMOSD or think you may have it, I suggest reading as much as you can about the disease and hearing others' experiences. I’d also recommend joining a support group where you can connect with others and learn more about their stories. I’ve made friends that I count as family through my support groups.

Working With Your Care Team

I’m very familiar with taboo topics from talking about the ins and outs of animal health on our farm. Because of this, I wasn’t afraid to talk to my doctors about all aspects of my NMOSD — even bowel movements and sexual dysfunction. I built out my own group of doctors who treated me like a true partner and even gave me their phone numbers in case I have urgent questions.

It’s also important to pay close attention to your body and remember that there isn’t time to wait when it comes to your health. You need to prioritize yourself just as much as you would a loved one or furry friend. If you have new or worsening symptoms, tell your doctor right away.

Navigating the Path Forward

I’m never going to let NMOSD force me to give up what I love, whether that’s reading my favorite book or taking care of my cows. I just had to be open to new ways of doing things, like reading with my smart speaker. For easy access to the fields, my family added a special lock on our gate, so I can still be involved on the farm.

I am extremely passionate about supporting other people with this disease, and I hope every person can start by advocating for themselves. And remember — none of us need to give up what makes us the happiest or helps us feel like ourselves.

Hear more about my NMOSD journey and share your story to help others in the community.