“Where are you?” Gina Leonardi recognized the voice on the other end of the phone; it was her boss. But, she had told him the day before where she would be.
As a toddler, Leonardi was diagnosed with beta-thalassemia, a rare blood disorder that reduces the level of oxygen-carrying hemoglobin in her blood, resulting in anemia — a lack of functioning red blood cells that causes fatigue and weakness. To help restore her red blood cells, for the last 48 years, she has received regular blood transfusions to help treat her anemia. That’s where she sat when she got the latest interruption from her boss. Within months, she would be out of her job.
Dealing with a rare disease like beta-thalassemia can make maintaining a job tough. In a recent survey, 38 percent of patients with rare diseases said they missed more than 30 days of work in the last 12 months because of their illness. In addition, in a survey of European employees, 41 percent of patients and caregivers said they needed special leave at work, but could not obtain it. For this year’s Rare Disease Day, which carries the theme of “bridging health and social care,” Leonardi explains how support from her family throughout her treatment has helped her deal with those who may be insensitive to her condition.
How often do you receive transfusions to treat your anemia from beta-thalassemia?
“I get transfusions every three weeks. While I recognize these are vital to treat my anemia, it disrupts my routine because I’m in the hospital for a couple of hours, depending on how many units of blood I get. It takes up my entire day. I can’t do much while I’m there and don’t feel like doing anything after either. I’m just drained.
I used to drive from my house in New Jersey to a hospital in New York City. I would leave at 10 in the morning and not get home until 10 at night. Then four years ago, I had my daughter and I couldn’t spend that much time away from her, so I started going to a hospital about a half hour drive from where I live.”
What routines have your treatments disrupted?
“Beta-thalassemia has disrupted my career. I’ve been in the mortgage industry for years, and I was a loan officer assistant for a while. It’s a cut-throat business. I had informed my boss that I had a medical condition, and I told him ahead of time that I was going to be out every three weeks because I needed to get treatment.
Despite that, the demands of the job added even more stress to an already stressful situation.”
My job was very important to me, but my health has to come first.
How did that eventually turn out?
“My medical condition forced me to leave my job. I did not feel like my employer was supportive or that I could meet the time commitments required to perform my role.
My job was very important to me, but my health has to come first. So I left.”
Did you end up finding another job?
“Quitting was the best thing I could have done. Now, I’m a real estate closer, collecting and reviewing the documents when someone buys a home. It’s much more flexible than being a loan officer assistant for a mortgage brokerage, so if I need to miss a day of work, I can do so without repercussions.”
How important has support from family and friends been in this process?
“My parents have always been there for me. My mom took me into the city for my treatments when I was younger, and then my dad took over when she started working. We’d go to lunch together, and he’d turn on the TV in the hospital. It’d always be too loud, and I would have to yell at him to turn it down.
He still comes with me to this day. We have a very close relationship. He doesn’t leave my side.”
Do you have any tips for other people living with a rare disease?
“The first thing is to stay positive and keep up with your treatments and tests. Do what you have to do to live your life.
I would also like people to know that they are not alone. Some people are lost and feel like they don’t have anyone. I’m blessed to have my family and friends. I want people to know that it’s okay to talk with others. There’s so much support out there for people with rare diseases, and I hope that they are taking advantage of it.”
To learn more about this rare disease and others, read “Rare Disease Day: What It’s Like Living with Behçet’s Disease.”