The more you know about someone, the better chance you have of selecting holiday gift they would enjoy. But what if your pal or loved one is managing a health condition?
Jodi Taub, a therapist and a primary immunodeficiency patient, says there are a few watchouts, but don’t overthink it. Look for thoughtful gifts such as a framed picture, a donation to a patient advocacy nonprofit organization, or a gift certificate for something you know they enjoy. For the recipient, gift certificates are a thoughtful choice, Taub said, because there’s no time-consuming hassle of returning something that didn’t hit the mark.
Because people managing a chronic health problem might have dietary restrictions, she suggests avoiding food and beverage gifts.
“Although bringing a box of chocolates or sweets might be a nice gesture, they may have ongoing food restrictions due to gastrointestinal issues, or medications that may not mix with various foods or wine,” Taub said.
Looking for gift ideas for someone who is a member of the rare disease community? Here are our picks for the 2023 season:
Something to read over the holidays: Increasingly, people who live with rare conditions have been telling their own stories in memoirs and books for children. Here are our recommendations, including a few recommended by Knowrare’s list of 12 impactful books for people facing rare disease:
“Option B: Facing Adversity, Building Resilience and Finding Joy” by Wharton psychologist, Adam Grant, Sheryl Sandberg, the author of “Lean In,” offers various perspectives on handling adversity.
"Extraordinary! A Book for Children with Rare Diseases" by Evren Ayik and his mom Kara (a teacher), sets out to uplift and encourage children while giving an age-appropriate definition of rare disease. Evren shares his experience with the genetic disorder acid sphingomyelinase deficiency (ASMD).
The "Nico” book series for children who have the rare disease hereditary angioedema 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.
“Chasing My Cure” by Dr. David Fajgenbaum gives a harrowing account of how the gifted scientist and physician nearly died and then discovered a treatment for his own life-threatening condition, Castleman Disease. You can listen to a CSL podcast with Fajgenbaum to learn more about his story.
Nominated for a National Book Award, “The Invisible Kingdom: Reimagining Chronic Illness” by Meghan O’Rourke lays out the labyrinth journey the author took as she sought a diagnosis and treatment for a variety of symptoms. Primary immune deficiency patient and therapist Jodi Taub reviewed the book earlier this year.
Gifts that celebrate Rare Disease Day 2024: The annual global event is most often commemorated on February 28, but the true date is February 29 – leap day. Organizers chose the day because it’s rare and 2024 is a leap year. Here are some gifts with a Rare Disease Day theme:
Colorful lights: On Rare Disease Day, supporters light up monuments, homes and businesses in pink, green, blue and purple. The aim is to raise awareness for all rare diseases and the 300 million people living with an estimated 7,000 conditions. Last year, CSL in Marburg, Germany, used pedal power to supply the energy to illuminate a historic church.
Rare Disease Day gear: The National Organization for Rare Disorders (NORD) has an online store full of conversation-starting sweatshirts, tote bags, hats and mugs. 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.”
Learn more about why the rare disease community chose the zebra to represent patients who search for diagnoses and hope for new treatments and cures.
