Elizabeth Heller, is a woman living a full life – student, activist, wife – and does it all, living with Duchenne. Considered to be a disorder that predominantly affects males, Elizabeth is an exception. Each year, Elizabeth joins PPMD in Washington to tell her story and to speak on behalf of those of us not there to speak for ourselves. She wants to pursue public office one day so that she can continue to give a voice to not only rare diseases but to those who are perhaps the rarest of the rare disease community. This is an amazing woman, changing hearts and minds with everyone she meets. We’re lucky to have her as such a vocal part of this community and we celebrate her as our June voice.
Thanks for talking with us! It’s the end of the school year so you must be super busy and we appreciate you taking time out for PPMD! Some questions for you…How old are you? What do you do for a living? What did you study?
I’m 25. I am a graduate student pursuing a Master's degree in Geospatial Information Systems & Technology at NC State University and I manage a community garden in Carrboro, NC. I went to (and loved!) Guilford College in Greensboro, NC where I studied Political Science and Environmental Studies.
When did you learn about Duchenne and how were you told?
I was diagnosed when I was eleven (1997) and, honestly, I have very little memory of it. Though it must have been traumatic for my family, it wasn't for me because it didn't severely impact my daily life at the time.
Tell us about your experiences in Washington at the advocacy conference. Why is going to Washington important? You live with a disorder that is associated with boys/men. What have been the biggest challenges of living with Duchenne as a woman? How is Duchenne different for women? What would you like people to know about Duchenne?
Going to Washington is critical to show members of Congress a specific need: that Duchenne is a condition affecting their constituency. Framing the issue this way invites lawmakers to engage more directly than they might otherwise for a generic "good cause." Of course sick kids are easy to care about, but until we go to lawmakers and say "my family needs specific help and this is what you can do to help us," legislators' generic "concern" will fail to translate into real change. Since I studied political science and intend to pursue public office someday, I've found these conferences an exciting chance to go to Washington and participate meaningfully in the legislative process. I confess I'm the type of political junkie who gets misty eyed traversing "the halls of Congress."
For me, it's also important to interact with other conference attendees for two reasons. First, I'm often the first female with Duchenne that many advocates, physicians, and parents encounter; as our framework for understanding this disease continues to expand, I want to make sure that people are aware of me and others like me. Second, as a thriving young adult, I find that my presence helps reassure parents of newly diagnosed children that the things they want for their kids – a college education, an independent life, fulfilling relationships – are still attainable if complicated and often frustrating.
That said, I am lucky to have my husband Chris, who has done a lot to help me create the life I now enjoy. I do think that building this kind of relationship is probably easier for disabled women since some degree of dependence and helplessness aligns with stereotypes about our expected gender role. Having a husband care and provide for me is less socially atypical than the reverse would be.
Though Duchenne has progressed at a slower rate for me than it does for most men, recent progress has improved prognoses to the point that we can no longer frame Duchenne exclusively as a pediatric issue. Since recent conference discussions have focused on enabling those with Duchenne to access fulfilling adult lives, I hope my own experiences can help other young adults feel empowered to challenge conceptions of what's possible.
The biggest challenge is that nobody knows how it's different, that's the lingering question. From a medical perspective, the fact is that there is no clear prognosis for me. I want people to know that it's possible for women to manifest Duchenne and that it can range from severe manifestations such as mine to milder, but still medically serious ones. I want awareness to reach a point where every mother of a child with Duchenne gets herself tested and all of her sisters get tested. Mothers need to know that what they're experiencing may not just be the wear and tear of being a caretaker, but could be Duchenne symptoms.
Finally, if you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
Limiting myself to living people: Howard Dean, whose 2004 presidential campaign was the source of my political awakening and remains an inspiring crusader for public health and social justice. The Dalai Lama because studying Buddhism has been an important source of strength and clarity for me and because I'm inspired by the way he withstands a life of constant struggle with grace and compassion. Miss Manners, because I have lingering questions about how to properly use my asparagus server.
Thank you Elizabeth for being so candid with us and for sharing your story. Thank you also for adding your voice to ours in Washington. And good luck with the burning asparagus server issue!
Will Nolan, Communications Director
Read more PPMD Staff Blogs