Thriving Rare
A New Book Offers Hope to the Rare Community… And Beyond
By Gina DeMillo Wagner
As a child, Becky Tilley often felt like she didn’t fit in or wasn’t as successful as other kids in most academic areas… except for one. “When I was younger, and I was in special needs English, even then I really loved reading and writing so much,” she remembers. “It was my favorite subject, the only subject I liked actually.”
Becky recalls looking for any excuse to read and write, such as writing letters to her family. As life went on, however, she lost sight of that strength. “Now it’s come full circle,” she says, “because I’ve returned to writing in adulthood.”
It began when Becky started blogging about her experience with Koolen-de Vries, a genetic syndrome involving the 17th chromosome. She learned as an adult that she has Koolen-de Vries along with two of her children. Once the shock wore off, Becky says that the diagnosis was helpful for her to make peace with her past, and writing helped her process all the joys and challenges of the condition. “I love to share hope and inspiration through writing,” Becky says. The more she wrote about her experiences, the better she felt and the more she wanted to share.
Her new book, Thrive Rare: Embracing the Uniqueness Within, was born of her desire to spread hope. “Originally it was just going to be for the rare community,” Becky says. “But then I thought about the things I battled with, especially as a child: Not fitting in, being bullied, going through insecurity, feeling like you don’t belong in the world, worrying that you can’t achieve anything. I thought, these are things that everyone battles with in some shape or form. It’s a universal struggle that we all have.”
Her book offers a mix of personal stories, quotes, life experiences, and advice to others who are facing any sort of adversity. “I thought, why not make it mainstream, speaking to the rare community while also raising awareness, and at the same time write things that the world can relate to?”
So that’s exactly what she did. Thrive Rare is packed full of encouragement for anyone who has ever felt like they don’t belong. We asked Becky to share some of her favorite takeaway messages from the book. Here are her top three:
“Leading by example is more powerful than just giving advice. Let your children witness the strength, assurance, and satisfaction that comes from being authentically yourself. Demonstrate, don’t just preach, the importance of embracing their unique qualities. Your shining light will inspire them to do the same.”
“A solid foundation of trust is crucial for establishing strong relationships, both with others and with yourself. Focus on nurturing self-trust and confidence in your own abilities and decisions.”
“Celebrating each and every accomplishment, no matter how small, adds joy to your journey and enriches your life.”
Want more inspiration? To purchase Becky’s book, click here.
To read more about her journey with Koolen-de Vries, click here.
Latest from Know Rare
Discover the latest treatments for IgA Nephropathy (IgAN), a rare kidney disease. Learn how current medications and emerging therapies work to slow progression, reduce proteinuria, and protect kidney function.
Discover how patient education empowers individuals with rare diseases to better understand their diagnosis, make informed decisions, and actively participate in their treatment plans. Learn why clear, compassionate communication is key to improving outcomes in rare disease care.
A heartfelt mother’s account on five years of navigating pediatric specialist waiting rooms with her medically complex child.
A powerful personal journey through Koolen-de Vries syndrome, ADHD, and neurodivergent parenting. Discover how one mother turned diagnosis into empowerment, embracing difference, healing guilt, and raising resilient, remarkable children in a world that doesn’t always understand.
Toni Roberts lives with Epidermolysis Bullosa, a rare genetic disorder that causes the skin to be extremely fragile and prone to blistering and tearing. Toni’s condition profoundly impacted her older sister, Cady Ward. Witnessing Toni’s daily struggles and challenges, Cady was inspired to become an advocate for rare disease and take on an extraordinary challenge—run an ultra-marathon.
Dr. David Fajgenbaum was in his third year of medical school when a rare and mysterious illness derailed his plans. Crushing fatigue, abdominal pain, and multiple swollen lymph nodes progressed rapidly, and he found himself in the ICU with multiple system organ failure. Recovering from the brink of death, he was diagnosed with Castleman disease (CD), a rare condition that at the time was thought to be a lymph node disease with similarities to cancer.
Learn about Dr. Rohit Aggarwal’s efforts in creating more centers of excellence for myositis, as well as educating, empowering, and connecting patients to clinical trials.
Recognizing the need for an effective way to treat becker muscular dystrophy, researchers have been studying the cause of muscle loss, and ways to stop it from happening.
After his diagnosis of limb-girdle muscular dystrophy type 2B at age 21, Chris initially opted for a safe career path, choosing jobs with steady income, benefits, and predictability. However, this decision made him feel like something was missing. Find out how Chris was finally able to follow his heart, finding purpose and contentment in becoming a writer.
Learn more about CureGRIN, founded in 2018 by parents of children diagnosed with GRIN Disorder to help find cures and therapies for people around the world suffering from these conditions.
Learn about the incredible story of Edward Gent, a Sports Nutritionist diagnosed with MMN, who decided to create an app to help others worldwide with their disease and symptom management.
Find out about 7 research areas identified as priorities in Sickle Cell Research and about a sickle cell disease drug, which was originally approved for treatment, that has been taken off the market.
It’s no secret that it is difficult to get to a pain medicine specialist. There are just so many people in pain who cannot find relief, and are looking for help. Learn about Bliss Health, which provides access to pain management services through virtual consultations, through a dedicated team of medical professionals who specialize in the diagnosis, treatment, and ongoing management of various types of chronic and acute pain conditions.
There are over 50 million people in the United States that live with chronic pain. However, researchers studying pain have learned something important: perception of pain is personal, and may have more to do with other factors than just the physical cause of the pain.
If you are coming across high copays and struggling to afford your treatment plan, here are a few options that may help you reduce the costs of your medications.
At age 15, Becca Salky became her own medical detective, playing a key role in uncovering her diagnosis. Now, as a Clinical Research Coordinator at Massachusetts General Hospital, she focuses on spreading awareness about MOG, finding better diagnostic tools, leading clinical trials, and fighting gender disparity.
On the “Rare Insights” podcast we bridge the gap between those living with rare diseases and the biopharmaceutical industry.
Why Men’s Health Week (June 10-16) matters for the Rare Community, and how you can take part.
June is Pride Month, and at Know Rare, we are committed to celebrating the rich diversity within the rare disease community.
Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.
When you live with a rare disease, the joyful experiences risks can bring are all the more valuable.
This summer, NMOSD and MOGAD patients, caregivers, clinicians, nurses, researchers, and advocates are invited to join The Sumaira Foundation at Emory for TSF's Atlanta Patient Day.
Know Rare writer Gina DeMillo Wagner’s new memoir, Forces of Nature explores powerful themes related to caregiving and rare disease.
Journalist Lindsay Guentzel offers an inside look at life with the rare muscular condition.
This May, Know Rare is shining a light on myositis, a group of rare autoimmune muscle diseases that can have profound effects on daily life. This is an important time for the myositis community and the rare disease community at large: a time to share stories from those living with the condition, share more information about the current state and future of the disease, and advocate for better treatments that will ultimately enhance the quality of life for those impacted by it. Whether you're a patient, caregiver, or advocate, join us in raising awareness and supporting those affected by myositis.
Author Chris Anselmo explains why being mindful of your pace can have major benefits for your health and well-being, and offers some tips to help.
