3 Ways One Woman Didn't Let ITP Interfere With Her Life
Beth Siegelbaum’s mountain bike really got a beating last summer. With husband, Ed Holowinko, in tow, she pedaled for six days on Prince Edward Island’s Confederation Trail, a packed-dirt path that winds alongside rivers and through wetlands and hardwood groves. Together, the couple racked up 200 miles, and Beth’s only concern was keeping her tires pumped up.
Vacations weren’t always so anxiety-free for the Norwalk, CT, couple. A few years back, Beth would take off with her family only to find she needed to have her blood checked—and receive an infusion for her ITP—right in the middle of her vacation! “I got to see the insides of hospitals in Sedona, AZ, Gunnison, CO, and Savannah, GA,” she quips. But staying abreast of new ITP therapies and working with a doctor who welcomes her input have helped the avid cyclist find a medication that works for her. Now, Beth books her vacations without fear.
A wedding—and a wake-up call!
Diagnosed with ITP in the early ’90s, Beth, a retired computer programmer turned X-ray technologist, was at first only mildly bothered by her low platelet count, which for years ranged between 70,000 and 90,000. “It wasn't alarming,” she says. “I got lax about it because I was stable—and I’d actually forget to get my blood checked.”
But after getting her blood tested for a marriage license in May 2000, Beth was ordered to hightail it to a hematologist: Her platelets were down to 22,000. “Since that time, my platelets never came up again by themselves. Without treatment, they stay around 3,000.”
A new path to tranquillity
When Beth learned of a new therapy at an ITP conference, she asked her doctor about it and they agreed to give it a try. The goal of the therapy is to boost her platelet count to 50,000. Her legs, Beth adds, are her “petechiaeometer”—when petechiae there are dense, she knows her counts are low and she needs to see her doctor.
Now, Beth gets an injection every Thursday morning and visits her doctor monthly for a checkup and blood test. “It’s a lot more convenient than what I was doing before,” she says. And mid-vacation infusions are a thing of the past.
Living a normal life
“Sometimes, I wonder if I’m in denial, but, with this medication, I don’t feel bad anymore. I just roll with the punches,” Beth remarks. That includes taking 20-mile rides every weekend with Ed on their low-to-the-ground recumbent trikes, which always get a lot of attention on the trails!
“That would be my advice to people with ITP,” Beth adds. “Live your life as normally as you can. Be educated about your condition and do what you have to do, but don’t let it run your life.”