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Travel in Tandem - Partnerships & Marriage

A little over a decade ago marriage seemed a goal out of reach for many cystic fibrosis patients. Young CF adults, once told by well-intentioned doctors that they could only expect to reach their teenage years, have benefited from remarkable advancements in the treatment of the disease, and may now be outliving those predictions. Currently, more than a third of all cystic fibrosis patients are over 18.

"As CFers like myself are living longer, we have to learn to think long-term," says Lauren, a 26-year-old environmental scientist and freelance writer who was diagnosed at birth with meconium ileus. "Decision making, especially those big-life decisions like marriage, parenting and career, are that much more difficult when life as we know it doesn't look the same for us as it does for our healthy peers."

Investing in the future

Planning for the future may be a new concept for you. If marriage or a long-term commitment is in your plans, then you may be wondering how, or if, you will find someone who can handle your disease. You're not alone.

"I was afraid that I wouldn't find somebody that would love me, (someone) that wouldn't be totally and completely turned off by CF because it is a big hairy deal," Lauren admits.

Figuring out how to break the news to a love interest can be a challenge. Some people are more relaxed about it; others fret and plan while fearing the worst — that the someone they like will walk away.

When Lauren met Brad, it was a case of boy meets girl. Boy likes girl. Girl likes boy back. She tried to plan how she would tell him about her CF, but in the end he found out accidentally.

One day, just after she'd met him, she received a chain e-mail that asked her to answer personal and philosophical questions about herself, and then forward the e-mail on to friends. Brad was on her list of recipients and she didn't notice.

Her answer to "What would you change about yourself if you could?" took Brad by surprise when he received the forward. It read: "I wish I could change that I have CF."

Brad nosed around on the Internet to find out about CF, and was floored by what he saw there. "I just thought, ‘How could this horrible thing be happening to this wonderful person I have met?'" As the two fell in love, however, his helplessness transformed into something much more tangible.

"I wanted to do what I could to make it as easy for her as I could," said Brad, "so I married her."

And baby makes three?

Another complex issue to navigate for many adults with CF is the question of whether or not to have children. Most men with cystic fibrosis are sterile, while most women with CF are not. However, sterility can be overcome using the latest in fertility technology. And that keeps the issue on the table for most adults with cystic fibrosis.

"It's a scary thought, talking about kids for me," says Brett, a 25-year-old man with cystic fibrosis. He has shared his hopes, dreams and fears about marriage and children with his girlfriend. "What if, worst-case scenario, we have kids … and by the time they're 12, 13, 14, 15 years old, I'm not in the picture anymore?"

Some married CF patients elect to adopt, rather than try to have their own children. For women with CF, it can be a much less grueling process on a body already fighting a life-shortening disease. And for men, it frequently bypasses the need for high-tech maneuvers in a fertility clinic.

Genetic Counseling

The American College of Obstetricians and Gynecologists recommends that the carrier screening test be made available to couples considering pregnancy. This test, which uncovers whether or not someone is a carrier of the CF gene becomes even more important for couples in which one partner has cystic fibrosis.

If both partners are carriers of the CF gene, they have a one-in-four chance of having a baby with CF. A discussion with a genetic counselor about the best practices for this situation is a sound idea, giving them the opportunity to consider genetic testing.

Love, marriage and children. Heady topics for cystic fibrosis patients who, at one time, may never have dreamed they were a possibility. Now that medicine has made adulthood a possibility for CF patients, it's more important than ever to plan for the future.

Source: Genetic Testing for Cystic Fibrosis, National Institutes for Health Consensus Development, Statement on genetic testing for cystic fibrosis, 1997.