Growing Up Rare: The Young Adult Experience with Rare Disease

Growing up is tough. From learning to drive, applying to colleges, and learning to manage your finances, transitioning to adulthood holds its own challenges for everyone. Paired with the added complication of having a rare disease, these young adults are faced with unique obstacles in their journey towards independence from their parents and caregivers. 

We spoke with Maddy, a young adult with a rare disease, to learn more about her journey of transitioning into adulthood. As she reflects on her experience of growing up rare, Maddy begin to uncover some tips and resources to make growing with your disease, and doing it in the time of COVID-19, a little easier. 

Finding Community

Maddy speaks at World Encephalitis Day Conference in 2020

 Maddy became inspired to join HESA (Hashimoto’s Encephalopathy SREAT Alliance) after her own experience with Hashimoto’s Encephalopathy, saying “after what I went through, I felt passionate about helping others with this disease. I also felt very fortunate that I was diagnosed and treated for it, because there are others who have not been… I feel a responsibility to be a voice for these people.” 

Maddy is acutely aware of her position as an immunocompromised or “high-risk” individual. “With something like a virus, my medications don’t leave me very well prepared to fight it off,” she says. “This has me concerned and very cautious right now because I definitely don’t want to test the waters when it comes to my health.”

Maddy’s condition flares up whenever she gets something as simple as the flu, causing her to become “double sick,” with both an HE flare-up and the flu. 

“I feel lucky that I am able to receive at-home transfusions.”

Despite this fear, Maddy feels “lucky that I am able to receive at-home transfusions and live at home with my parents at this time where many other people with my disease don’t have as many resources as I do.” 

So, What Now?

Like all of us, Maddy’s life have been put on hold. Uniquely, the journey of adjusting her life to accommodate her health needs doesn’t stop once the coronavirus has passed. However, through finding the support of a community and keeping an unrelenting eye towards the future, Maddy continues to redefine what it means to be young and rare.