Great Strides 2008
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One on One: Nick Stephens

Nick Stephens was recently named to the Greater New York Chapter’s Board of Directors. He has been a longtime participant at chapter events and is actively involved in recruiting new volunteers.

A year or two before Nick Stephens was born, his parents lost a three-month old son to cystic fibrosis. “When I came along,” Nick said, “they were on the lookout for the disease.” Diagnosed with CF when he was six months old, Nick, who turned 54 in August, has been a partner at the New York investment firm Edgewood Management LLC since 1984. His career is proof positive that, as more people with CF live longer and healthier lives, they can look forward to pursuing not just jobs—but solid careers. Nick spoke to Commitment about what it’s like to be an adult with CF in the workplace, and the insights he’s gained from having lived with CF.

As a child growing up with CF, what were your dreams and expectations?

It’s funny— I always thought I had a pretty normal childhood, but when I look back, and now having two kids of my own, I realize when I was young, I somehow must have absorbed the fact that I wasn’t supposed to live very long. So I can’t say I sat around dreaming of being President. I can’t really tell you what my dreams were, except maybe to “live a normal life.” And I think that I’ve actually done that, which I guess means I’ve realized my dreams.

Was CF a factor for you in considering what type of job or career you wanted?

I was born with a relatively mild case of CF. Treatment was pretty primitive in those days, and I wouldn’t have survived if my case had been more severe. By the time I made it through college and grad school with an M.B.A. from Columbia, I was confident that my energy level was high enough for full-time work.

You told your employer about the illness shortly after you were hired. What made you decide to do that?  

I was lucky. Early on, I worked closely with the founder of our firm and got to know him well enough to feel comfortable telling him about the disease. He was extremely understanding about it; in fact, he was totally supportive of me and anything I had to do to maintain my health. And today, I think compared to what it was like when I was in school, people are much more open and accepting of disease-related issues for the most part. It’s certainly easier if you feel you have an accepting group around you.  

What is your treatment regimen and how does it affect your work schedule? 

Every morning on weekdays I get up at 5:25 and put on the vest. I use that for probably 45 minutes. While I’m doing that, I am inhaling either TOBI® or saline or Pulmozyme®. Then I do some push-ups and sit-ups just to keep things moving. That’s pretty much it unless I’ve had a really bad cold and come home at night and hook up the vest and use it a little longer. So most of my treatment is done outside of work—I’m not doing it while I’m at the office. As for enzymes, I do have to take a few every time I eat, but not many. People are polite, but I think they notice me popping pills at lunchtime.

Financial management must be a fairly high-stress career. Does CF affect how you handle stress—and vice versa?

While my job has periods of stress, it is not stressful all the time, so stress is rarely an issue for me. I think raising my children may have caused more prolonged stress than my job over the last 23 years! [laughs] The only aspect of my job that may be directly affected is when I travel a lot. Too much time on planes can cause problems for me, what with the dry air and the exposure to who knows what; I always expect to get a cold a week later, and colds are no fun for people with CF.

Have the effects of CF changed your daily life over time?

I was never a super athlete, so I didn’t have to give up my marathon running or anything like that. But a big change occurred when I was in my 20s and met my wife Lisa. Before then, I had never done any kind of percussive therapy, you know, where they pound on you. It just so happens that around the time I met my wife-to-be, I really needed it. And bless her heart, she ended up doing it for like 18 years. I think sometimes, when she was mad at me, she enjoyed it, and she’d really whale on me!

Do you have any recommendations for young people starting out in the job world?

Well, you certainly need insurance. The costs of just TOBI® and Pulmozyme® are incredible if you have to bear them yourself. It’s funny. I would never tell my children, who don’t have CF, to make insurance one of the top priorities in their first job. But I think if you have CF, you’ve got to do that. Personally, I’ve never had any trouble getting health insurance or with getting my insurer to cover any aspects of my disease. In fact, I feel a little guilty because I’m sure they lose money on me.

In terms of longevity, you’ve beat the odds against CF. How do you feel about that?

I have to say that, even though I get up every morning and hook myself up to the vest, when I’m going through the day, I often forget about having CF. And then there are periods when I think, “Man, I deserve a medal for having gotten this far and done all this.” Those times are rare, but they do happen. My younger brother, John, died last year of CF and that probably hit me more in terms of the burden of this disease than all the years I’ve had to put up with CF, because he had a worse case. He actually got to age 51 with much less probability than I’ve gotten to 54. My parents have suffered quite a burden having watched two children die of it. And that, to me, is probably the saddest thing. You know, they’ve gotten elderly and losing John, they sort of relived the nightmare of 1952, when their first child died. That was very sad to see.

What advice would you give the parents of young people with CF?

It seems to me that when they get the diagnosis, they sometimes have a reaction like it’s a death sentence. But I think, because of the fact that children are being diagnosed much earlier and all the therapies that have been developed, the lifespan is greatly increased. Thanks in large part to the research the CF Foundation is doing, new therapies are coming down the pike in the next few years. Obviously, these parents have to pay more attention to their children’s health than the average parent. But I think the outlook is really bright.