Tekeisha and Zoe

Tekeisha and her daughter Zoe, co-founders of Zoe’s Story, chatted with us about how they use journaling to empower the rare disease community.

When Zoe experienced multiple broken bones over a few years, her mother felt that something wasn’t quite right. After many doctor visits, an MRI, a biopsy, and other tests, doctors thought Zoe had an infection or cancer; however, a visit to a specialist in 2016 finally revealed that Zoe had chronic recurrent multifocal osteomyelitis (CRMO), also known as chronic nonbacterial osteomyelitis (CNO). The symptoms of CRMO/CNO include bone lesions, fevers, and painful inflammation. There is no known cause or cure, and it affects one in one million people.

While they had access to wonderful medical resources, there was nothing to help with the emotional impact of Zoe’s diagnosis.

Tekeisha notes that Zoe has always been introverted and how empowered her daughter felt by writing about her feelings. “Once we got through the diagnosis and treatment, the next step in our journey was journaling,” recounts Tekeisha. The duo set out to provide families with the same experience and relief that Zoe received, and Zoe’s Story was born. The organization provides free journaling kits to encourage others to access this creative outlet for their emotions and experiences.

“Writing and journaling are easy ways to let people get their emotions out. When I can journal and talk about my illness, people become more open, understanding, and compassionate.” – Zoe

“When I see her writing a lot, I know something is on her mind. This indicates to me to open that door for her to share what she’s feeling,” says Tekeisha. Both she and Zoe agree there is no wrong way to journal, and they emphasize this during their Writing Workshops. These events bring together rare community members and families with the intent of helping them open up and express themselves through creative writing. During these workshops, participants are given a prompt to jump start their writing. The session leaders, Tekeisha and Brenda, create a safe, open environment where reflection and sharing are encouraged. 

Tekeisha and Zoe are no strangers to the importance of finding your community and your roots. They share how connecting with other families is another way to deal with the unknowns of living with a rare disease. They are a part of a very active Facebook group and even had their first meeting with the CRMO Foundation a year and a half ago. “I definitely never thought that I would hear about or meet this many people that have it [CRMO]. [Starting Zoe’s Story] brought so much awareness for me,” says Zoe.

Open up. That’s the advice that Zoe and Tekeisha give to anyone who is impacted by a rare disease – whether it’s through journaling, picking up the phone, or sending a message. Their goal is to keep advocating for everyone who has been impacted by a rare diagnosis. “Our tagline is ‘being one in a million doesn’t mean you’re alone’, and any time I see that, that drives me to continue to keep Zoe’s Story alive,” Tekeisha shares.

Learn more about Zoe’s Story, find out how you can get a free journaling kit, and attend an upcoming Writing Workshop on their website and/or Instagram.