Every year on the last day of February is Rare Disease Day®. This holiday does not feature an elf that sits on a shelf or a jolly man in a red suit. Instead, the National Organization of Rare Diseases (NORD) promotes Rare Disease Day® to raise awareness for over 7,000 rare diseases.
The NORD mission statement goes something like this:
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Chances are, if you are reading this post, you or a loved one lives with CVID, a rare disease. Common Variable Immune Deficiency (CVID) is one of the most frequently diagnosed primary immunodeficiencies characterized by low levels of serum immunoglobulins and antibodies, which causes an increased susceptibility to infection. Although CVID patients are born with this immune deficiency, it is often not diagnosed until adulthood. (Check out my CVID FAQs for more in-depth information.)
What is a Rare Disease?
According to the National Human Genome Research Institute, A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25 million to 30 million Americans.
NORD further explains that the definition of any disease affecting fewer than 200,000 people is considered rare comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. According to NORD, there are more than 7,000 rare diseases affecting 25-30 million Americans. In other words, one in ten Americans are suffering from rare diseases and more than half of them are children.
People with rare diseases often deal with debilitating symptoms. They also struggle to receive a proper diagnosis, find information and get treatment. The rarity of their conditions makes medical research more difficult. (For more information on rare diseases, visit www.rarediseases.org.)A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25 million to 30… Click To Tweet
The Zebra-the Mascot of Rare Disease Day®
The zebra is the official symbol of Rare Disease Day® (and also CVID) in the United States and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual and therefore each rare disease distinct.
There is a little more to the story of the Zebra’s honorary crowning as CVID’s specific mascot. Per the Ehlers-Danlos Support UK website:
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras. This identity has now been adopted across the world through social media to help bring our community together.“When you hear the sound of hooves, think horses, not zebras.” Click To Tweet
2021 Rare Disease Day® Deets
While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community. In the spirit of increasing awareness regarding rare disease issues, raising the profile of the rare disease community at large and celebrating Rare Disease Day®, this year NORD is promoting specific ways that individuals, organizations and groups can “show their stripes.”
Nationwide, NORD is encouraging everyone to join in the fun by wearing stripes (black and white or any color!). In addition, people can participate in conversations and campaigns on social media using the hashtags #showyourstripes and #rarediseaseday. Consider attending one of NORD’s virtual events, raise awareness through your local media and/or making a donation to NORD. (Information and materials to help you can be found here on NORD’s site.)
CVIDiva’s Challenge to You
This year I’d like to extend a special challenge to all those who know someone living with CVID. On February 28th, send a text message or make a quick phone call to your CVID Zebra. Get creative and post a message on social media using the hashtag #sendingcvidivasupport and @cvidivasupport. You could even go old school and mail a note to a CVID Zebra that you support.
Living with CVID is hard and a little support goes a long way. So, dress up like a Zebra or put on every single striped item you own and take a picture! Be silly! Send it to your Zebra (please post it so I can laugh too!) and remind them of your support!
Stay Strong My Zebra Friends!
ABOUT THE AUTHOR
Though DIVA as she may be, her path to success was not easy and is always evolving. Read about her journey in “Becoming the CVIDiva.” Feel free to send Susan Alynne a message at firstname.lastname@example.org.