Jewell, Maddie

Speaker Information
First Name
  Maddie
Last Name
  Jewell
Preferred Pronouns
  she/her
Email
  [email protected]
Phone
  (513) 646-7816
Organization
  Boonshoft School of Medicine
Job Title
  Medical Student
Credentials
  BS, patient
As we develop programs and resources to empower our diverse community, we ask participants to select the response that best reflects their race and or ethnicity:
  White (Non-Hispanic)
What rare disease(s) do you represent?
  Gastroparesis
How many years have you been involved with rare diseases?
  1-5 years
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Travel Distance from Los Angeles, CA:
  ~2000 miles
Presentation Information
Proposed Presentation Title
  Zebras Can Become Doctors Too
Presentation Summary
  I’m a first-year medical student that was diagnosed with gastroparesis three years ago and currently rely entirely on a j-tube for my nutritional needs. As a former division 1 athlete in soccer who was decorated in both athletic and academic honors, it was extraordinarily difficult to adapt my mindset and come to terms that the body I used to rely on to perform exceptional athletic and academic feats was no longer. My lifelong dream of pursuing medicine that sprouted from my mom’s cancer journey as a child was immediately called into question. I didn’t know if I could pursue a career in a field that has a notoriously prominent ableist culture. However, I recognized that my experiences and disease continuously grant me learning opportunities and a perspective I would have otherwise not had prior, ones that most medical students and physicians never experience. I chose to see the challenges that come with a rare disease as unique learning opportunities and saw the potential to teach and advocate for others in my future field with a rare lens.
So, I pursued my initial path to medical school, applying the same year I suffered major surgical complications that led to a nearly two-month hospital stint. The same year I had to reschedule my MCAT because test day came the day I was transferred from my hometown to Cleveland Clinic. But that same year brought five acceptances and the realization that as a physician, I was going to stand for more than I had initially bargained for and I was not only proud of it, but determined to help others choose to see their rare disease as a unique superpower. The resilience and strength that’s built from living with a rare disease is indescribable. I’ve learned invaluable and priceless lessons from the other side of the bed that I didn’t sign up for, nor would wish on anyone else, but I’m determined to carry them with me and use them to become a better physician and advocate for my patients- particularly for those with rare diseases.
In a life that we can so easily allow ourselves to fall victim to our rare disease, choose to find a way and stand for those just like you who aspire to follow the same path or even better, break new territory. I’ve learned that a rare disease only becomes limiting when you allow it to take the wheel, so choose to redefine your limitations and carry your rare disease with the strength and pride you have earned and never let your rare disease carry you.
Have you spoken previously for NORD?
 

  • No

Have you previously spoken at any rare disease events or are you planning to speak at any upcoming events within the next year?
 

  • No

Please provide up to 3 examples of previous presentation experience, include links to videos if applicable.
  National Computers and Writing Convention- George Mason University, Washington DC May 2018
“The importance of multidisciplinary research and collaboration between STEM and liberal arts personnel

NASA Ohio Space Grant Consortium- Cleveland, Ohio April 2019
“Effect of DNA methyltransferase inhibition on human DIPG cell lines in normoxic and hypoxic lines”

The Nutter Center, Dayton Ohio. August 2021
“The Brain is Not the Same”

Target Audience:
  Rare disease patients and families, healthcare professionals and students
Learning Outcomes:
  1.Recognize the unique skills and immense resiliency you have acquired from your experiences of living life with a rare disease- use them for good.
2.Actively strive to find the positives and lessons within the hardships and remember that we may not be able to control the hand we’re dealt but we can always control how we respond. Respond to defy the odds and help pave the path for others to follow.
3.Embrace the challenges and detours your rare disease brings, it’s a more scenic ride. Along the way, be proud of how you carry your rare disease with immense strength and never let it carry you.
Consent
  As a potential speaker for the Living Rare Living Stronger Patient and Family Forum I agree: