As delightful as warm socks or a gift card can be, sometimes you want to give a present that carries a little extra meaning. If a friend or family member lives with a rare or chronic disease, this list could help you find what you’re looking for.
Surviving and Thriving with an Invisible Chronic Illness
For people living with a chronic or rare illness, learning how to navigate daily challenges isn’t always straightforward. That’s why Ilana Jacqueline, who lives with a primary immunodeficiency, wrote “Surviving and Thriving With an Invisible Chronic Illness.” New York Magazine called it “an important antidote to the dogmatic ‘kale and vitamins’ tone of most ‘self-help’ literature.”
Readers will find advice, tips and tricks on relationships, school, work, unavoidable absences and managing medical care. For another patient’s take on invisible conditions, consider Meghan O’Rourke’s “The Invisible Kingdom,” which was a contender for the National Book Award.
Awareness-themed Clothing and Accessories
The National Organization for Rare Disorders is all about awareness and its online store is full of conversation-starting sweatshirts, tote bags, hats and mugs. The gift items feature a “Rare Rockin’” zebra, which is the icon of the rare disease community, and a reminder that “Alone we are rare. Together we are strong.”
Also in the name of awareness, the Alpha-1 Foundation offers a tie featuring a tie patterned with alpha 1 antitrypsin protein strands. Alpha 1 Antitrypsin Deficiency is a rare disease that can cause serious lung and liver problems.
The U.S. Hereditary Angioedema online store features a wide selection of gear to help more people understand HAE, which causes dangerous swelling. Find hats, totes, stickers, hoodies and even a onesie that says, “I love someone rare as a rainbow.”
A Necklace That Packs a Punch
Etsy shop owner Terri Decker, who says her passion is to create jewelry that tells a story, has created a rare disease necklace with a boxing glove charm and the message “FIGHTING BACK.”
A Fashion-Forward Medical ID Bracelet
Medical ID bracelets are a practical item that can help someone get emergency medical care, even if they can’t communicate. But they’re not exactly high fashion. When diabetes patient Lauren refused to wear the standard bracelet, a colorful idea was born.
Lauren’s Hope bracelets, in a range of styles, communicate disease info plus a little sparkle and personal flair.
When Children Feel Pain: A Book for Parents on Pain Management
Kids experience pain for any number of reasons, from broken bones to chronic conditions like sickle cell disease. It’s difficult for parents and caregivers to navigate, but authors Rachel Rabkin Peachman, a health and science journalist, and Anna C. Wilson, a pediatric psychologist, offer calm, friendly advice.
The book aims to improve pain management and explain some of the complexities of pain experienced by kids and teens.
Extraordinary! A Book for Children with Rare Diseases
Written by Evren Ayik and his mom Kara (a teacher), this book sets out to uplift and encourage children while giving an age-appropriate definition of rare disease. Evren, now a student at California State University, Fresno, shares his experience with the genetic disorder acid sphingomyelinase deficiency (ASMD). The mother-son team hope the book will increase compassion and respect for young people who live with these conditions.
Children who have the rare disease hereditary angioedema will find books written just for them in the Nico series, which follows a young boy through common childhood experiences and not-so-common experiences, like traveling to Washington, D.C. to talk with members of Congress about HAE.