It’s time to let the world get to know our amazing rare advocates! Each week I will be highlighting an advocate here in my blog as well as social media. If you would like to be featured in the spotlight, please click here.
Patient Advocate | Narcolepsy
- Kenosha, WI
- Contact info: Twitter | Website | Facebook | Email
- Narcolepsy affects approximately 200,000 people worldwide
- Passionate about: Patient Support, General Community Awareness, Healthcare Professional Education
Why did you become an advocate for your rare disease community? What was happening in that community that made you want to take action?
My desire to advocate for others with narcolepsy and rare disease stems from my personal experience with it. I want to remove the stigmas attached to these disorders, even in the medical community where professionals/doctors in some cases only receive ONE day of studies on sleep medicine during their entire training. I want people to know what narcolepsy really is, not just a sleep disorder but a neorological one that encompasses ones entire life, its not funny like its depicted in the movies or on television. I want medical professionals to know what to look for, to decrease the average 7-10 years it takes to diagnose a patient properly. I want students diagnosed with narcolepsy to get the resources and accommodations they need to succeed and not fall under the radar, I want them to know their future can still be bright! I want rare disease as a whole to become a priority in the health care system, better research and development for treatment and cures. Better service/awareness in emergency rooms, most of all, I want all rare patients and their families to have HOPE!
What was your first success or defining moment as a rare disease advocate?
I’ve been sharing information on social media for several years about narcolepsy. Some people have said its for attention, but its not, its for that one person that needs to hear it and know they are not alone. One day, early last year my phone rang, it was my daughter’s friends mother, she was just diagnosed with narcolepsy and knew she wasn’t alone!
Share some of your biggest accomplishments as a rare advocate?
I stepped out and became more informed on how to advocate effectively in 2016, so I am fairly new at this. I started a blog in fall, 2016, to help others find information and resources to help in their journey with narcolepsy. I’ve written reviews on conferences. I ran a campaign for awareness by designing and selling t-shirts for Narcolepsy Awareness Day 2017, that benefited Narcolepsy Network.
Share some of the hard realities you faced advocating for your rare disease.
For narcolepsy a big one is stigmas, “I’d love to take a nap everyday, must be nice” or “I’m tired, maybe I have narcolepsy”, we need awareness! In speaking with a school nurse, her reply was that none of her 3000 students had narcolepsy and they don’t do continued ed for this stuff, her main concern was if I can drive! Unfortunately some people don’t care unless/until it affects them in some way.
What project(s) are you working on now for your community?
I am pursuing advocacy for narcolepsy in our local schools as well as providing teachers and school nurses with educational materials to know what to look for in the classroom, as well as accommodations that are helpful for students. I have added this information on my blog. I am now on the advocacy committee for NN. I am also pursuing training in public speaking on behalf of a disease community.
What advice would you give to an advocate just starting out?
Get involved, there are lots of great groups on Facebook and the internet to gather information and learn about resources available to you. Look for local support groups and if there aren’t any, consider starting one. Social media is a great place to put yourself out there, find and friend other advocates to see what they are doing. Attend conferences if you can and make connections.
Why do you find working with advocates from different disease groups beneficial?
I love working with advocates from other disease groups because we fuel each others fire! I learn about your community, you learn about mine, often leads to I advocate for you, and you advocate for me! We bounce ideas off eachother, what has been successfull and what hasn’t, fundraising ideas, etc. We’re all in this together to create a better tomorrow!