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Patient Stories: Barbara
"The most important advice I could give to someone who's just been diagnosed with this
is that they're not alone out there. There are other people, it's not as scary as you think,
and there is hope; there's more hope every day, the more we learn about this condition."
Somewhere on the coast of Maine, on a beach gently sculpted by wind and waves, you will find Barbara S. enjoying the cool breeze as she traces the shoreline with her two poodles at her feet. For Barbara, the beach has a calming effect, a sense of home. After her struggles with Hypereosinophilic Syndrome (HES; a disease caused by proliferation of white blood cells), she has learned to look at things differently, to appreciate the simple pleasures in life, a slower pace, and smaller victories.
Before coming back to Maine, where she grew up, she lived in Arizona for 25 years, working in semiconductor sales. There, it's over 100 degrees for six months of the year - something Barbara had learned to live with, but the heat became suddenly unbearable. She started to break out in hives and her skin became very sensitive. She went to her doctor, and he did a blood count. The cells that are normally active against parasitic infections or an allergic response were out of control. She was feeling fatigued and depressed, but her doctor could not pinpoint the condition. She went to a cardiologist, an allergist, an infectious disease specialist, and a rheumatologist - each ruling out the problems with which they were most familiar. She went to the Mayo Clinic to get their opinion, as well as a leading blood specialist at The Johns Hopkins University. It took about three more years before they could narrow it down to hypereosinophilia. As a disease diagnosed by elimination, it is not unusual for patients to have a long and tortuous path to finally arrive at an answer.
The fatigue would usually hit hard in the afternoons when she was working. She would drink countless cups of coffee to help her get through the day, but by the time 6 p.m. rolled around, Barbara was in bed for the night. She had no social life to speak of. Her day consisted of dragging herself out of bed to go to work, making a great effort to stay alert for her sales calls, and jumping from one appointment to the next. By 3 p.m., her energy was drained, and she would have to struggle just to complete a sentence.
The signs of the disease were becoming more obvious over time. HES is like a cruel lottery; each patient can draw a different set of symptoms. With Barbara, it was her skin that was affected most. Big red blotches would come and go. There would be intense itching for a time, and then that would go away. She could never really know when it was going to hit or how serious it would get. It got to a point where she could not wear any makeup because it felt like it was burning her skin. She felt lucky that the HES had not attacked her heart as it does in many other people with the condition, but it did affect her lungs. For Barbara, each breath seemed to sap her energy, rather than replenish it.
It affected her memory, too, as well as her ability to think clearly. One time at work, she had been at a training session for the entire day. When she returned the following day, she had no recollection of the session at all. That's when she knew that she could no longer work.
Her first treatment was prednisone, a type of steroid. The medication affected her system in a lot of different ways. She experienced weight gain and irritability. The slightest noise could set her off, and she stayed up during all hours of the day and night, always tired but never getting enough sleep. When the side effects became unbearable, her next option was chemotherapy, and after that, interferon. The treatments always introduced new problems and sometimes amplified her symptoms.
Adding to Barbara's frustration was the lack of information available about HES. Her doctors were not able to provide her with any statistics or direct her to a patient community. Even the Internet had limited information about HES, which gives you an idea why rare conditions like HES are often called "orphan diseases."
In response to this lack of information, Barbara started her own Web site, HESyndrome.com, which has developed into a tremendous resource for patients with HES. Not only has the Web site created a meeting place for people with HES to share their experiences, but it has also provided them with a sense of community and family. Now Barbara is gathering her own statistics and posting educational information to help others who are newly diagnosed, or who suspect they might have the condition.
Barbara and her widening circle of online compatriots look forward to the day when there is a treatment that could help them; when they can follow their career path and live where they want to live; when each waking hour can replenish their soul; and when a slower pace of life can be a choice, rather than a necessity.