Critical Conversations
Spero Shares Personal Struggles with Rare Disease
Imagine feeling fatigue, pain or otherwise unwell on a regular basis. On any given day, work, daily tasks, or just getting out of bed in the morning might be a struggle. For many people living with rare and other chronic diseases, this is their reality.
Millions of people in the U.S. live with “invisible illnesses,” in which they look fine on the outside, but in fact are chronically ill. They’re everyday people trying to lead productive and fulfilling lives, but sometimes it’s a chore just to get through the day.
Harper Spero helps people for a living—as a business coach, development consultant, community builder and through her podcast, Made Visible, illuminating stories of invisible illness—while she herself copes with a rare disease that often leaves her feeling depleted.
Spero has a rare genetic disorder called Job’s syndrome, also known as hyper-IgE syndrome (HIES). The disease affects multiple parts of the body, notably the immune system, leading to recurrent lung, skin, bacterial and other serious infections.
Every year, Spero comes to NIH for checkups, as part of a natural history study. During her most recent visit in February, she reflected on physical and emotional issues related to her syndrome.
“Bad days for me usually mean feeling totally drained, like I have nothing left to give,” Spero said. “If I don’t sleep well, my body just shuts down, and I’m running on empty.”
Over the years, Spero, who is self-employed, has readjusted her work schedule to prioritize her health. “I know my body and I know what I can handle,” she said, noting she works better in the afternoon and evenings. “I’m able to accomplish everything I need to do based on a schedule I’ve created for myself.”
She also has adjusted her personal activities, by setting boundaries and advocating for herself.
“I know how important rest is—along with yoga, acupuncture, fresh air, eating well and, most of all, actually listening to my body,” she said. “I can’t force myself to push through plans when I’m not up for it, and sometimes that means canceling, even when I don’t want to. Living in New York makes this tricky, since everything is scheduled way in advance, but that doesn’t always work when your health is unpredictable.”
Some people in her life though have not been sympathetic to her situation. Have compassion, she urged, “because you just have no idea behind the scenes what people are dealing with.”
Spero had first arrived at NIH in crisis. In 2012, she needed to know whether she could have surgery to remove a large cyst on her lung. Was it safe for someone with her rare syndrome to have that procedure? That spurred her to connect with the team at NIH that specializes in HIES, and she remains grateful for their exceptional guidance and care since then.
She shared, though, a personal concern that she hopes will help inform clinical care and spark dialogue in the women’s health field.
“When I think about coming to NIH 13 years ago in dire circumstances, where Dr. Alexandra Freeman and Dr. Steve Holland saw me within 48 hours of being in touch with me, and knowing that what I was dealing with needed to be dealt with immediately, I remember my parents asking: ‘Is there anything else we should be considering given this genetic condition?’”
Her care team then mentioned there is a 50% chance her future child would inherit the syndrome. “At the time, I was 27 years old and I was about to undergo this hardcore surgery,” Spero recounted. “The last thing I was thinking about was having kids.”
Several years ago, she began thinking about one day having children. And she soon realized, “I didn’t know what I didn’t know, and I didn’t know what to ask.”
“Things started to unravel as I started getting deeper into it,” she said. “I learned that it would likely be very unsafe for my body to handle pregnancy due to my condition and the medications I’m on that keep me alive.” This realization was devastating and she is still trying to process the news.
Freeman, a senior clinician at NIH who specializes in Job’s syndrome, said her team needs to better inform their patients about the risks surrounding pregnancy and fertility.
“With Harper, I don’t think we did a great job with that,” Freeman acknowledged. “We’ve really tried in the last few years to talk more with our patients about family planning.”
Spero said such conversations are critical across the medical field, and particularly for women of childbearing age who have genetic conditions.
“I think it’s a societal issue. It’s not just in the rare disease world,” she said. “There’s an opportunity at NIH [to consider] the importance of education around this topic, and how that can be fit into the incredible work that’s done there.”
Spero continues to navigate ways to preserve her health while advocating for herself and others with invisible illnesses. She considers her limits while seeking out activities that rejuvenate her.
“I’m a big believer of finding a balance in everything I do,” she said. When living with a rare or other chronic disease, “It’s important to get honest with yourself, know what you have the capacity for and stick with that, because you know what’s best for your body.”
To access episodes of the Made Visible podcast, see: https://harperspero.com/made-visible.
Read the NIH Record’s previous story on Spero here: https://go.nih.gov/JWXxAU8.