Column: We never know what troubles others face
A few years ago, I couldn’t even fake a smile.
I was physically and mentally exhausted from not feeling well for several years and having had unsuccessful treatment for my ongoing symptoms.
Then, finally, everything changed.
The diagnosis of a rare autoimmune disorder shook me to the core, but I was relieved I finally had an answer as to what had been plaguing my body.
I still couldn’t smile for months — processing the news and getting eventual treatment was taxing, as I expect it is for those who receive news of other life-threatening illnesses — but I had an answer.
So, in recognition of Rare Disease Day today (Thursday, Feb. 28), I am wearing my stripes (the zebra is the official symbol of rare diseases in the U.S.).
Julia’s Wings Foundation in Sherman will do its part in the coming days to educate the community about aplastic anemia, a rare bone marrow failure disease that affects just one in 250,000 per year, through its Wear Red Campaign (see story, Page S11).
The campaign — held in memory of Julia Malsin, 13, who died in 2012 — is held in conjunction with Rare Disease Day, which raises awareness about the 7,000 rare diseases, including mine, and their impact on patients’ lives.
While the number of rare diseases is relatively small, the number of people affected is much larger. An estimated 25 to 30 million Americans are living with a rare disease.
Congress, through the Orphan Drug Act in 1983, defined a rare disease as a condition that affects less than 200,000 people
The special day was first launched as a European campaign by EURODIS and its Council of National Alliances in 2008. It spread to the U.S. the following year and has drawn participation in nearly 100 countries the past two years.
The hope of the day is “to harness the creativity and energy of the millions of people around the world with rare diseases — and the millions who care about and assist them — to raise awareness and generate action,” according to RareDiseaseDay.org.
Those of us who live with a rare disease may not appear as if we are ill — just as those who suffer from some life-threatening illnesses and chronic conditions might not have visible symptoms all the time — but that doesn’t mean we don’t have bad days and wonder on a good day when a bad day will strike again.
Some of us have been fortunate enough to be treated and/or be in remission — meaning living with no active symptoms — but are at risk of flares and need to be regularly monitored.
Coming off the heels of Rare Disease Day and heading into Wear Red Campaign this week, I encourage you to reflect on the lives of individuals you know — and don’t know — who have a rare disease.
We never know what troubles others face on a daily basis. It’s important to be kind and thoughtful.
Check out the website for the National Organization for Rare Diseases (www.rarediseases.org), whose national headquarters is in Danbury.
It is an amazing resource, with a searchable database, for patients, caregivers and medical professionals who are interested in learning more about rare diseases, where to seek help and how to become an advocate.
After all, as the saying goes in the rare disease community, “Alone we are rare, together we are strong.”
Deborah Rose; 860-355-7324; email@example.com