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Health Happens Video

Laura

The medical team has been incredibly accommodating and they have… they are so supportive.

Laura

They really make you feel like it's going to be a team approach and you're included and they were just really felt like you were kind of welcoming you into a family type of thing so it was. I'd say that was our first kind of glimpse of the hope that we were going to have.

Laura

I do feel like we're going and seeing our family when we go down there. I mean, they've seen, you know, Ellie grow and they've been the ones to take care of her the entire time - to take care of us. You know, if we ever needed anything, we just would say the word and they… really are, I'd say, our foundation in getting through this.

Kristi

They're a great team I'm able to call them at all times the nutritionist is my best friend call her almost on a weekly basis so they become part of your family they're going to be with us for the next 18 years so …

Kristi

They treat you as a person… it's not a disease when you go into the clinic, it's just a condition that he has and we just talk about how to make him as healthy can be.

Kristi

Well the whole aspect of a team is that we are team players were all playing in the same team together and our game is protect my son and make him as healthy as can be so, ya they they're very important to me.

Kristi

Two times a day I have to give Braden his… his clapping and he hates it completely he thinks it's the worst thing put on earth he tries to arch his back and flop off the couch but it's just something that we have to do and he needs to get used to it but to involve my daughter, my daughter brings her doll into the situation and so she claps her doll next to me while I am clapping Braden and so that's something that we do together as a family.

Kristi

Unfortunately he probably will be mad at me a lot of times when he is growing up because I am going to be asking him to do things, I am going to be making him eat, I am going to be making him take medication. So I am probably not going to be his favorite person for a long time.

DeeDee and Larry

(DeeDee) Oh, they're awesome. (Larry) We have complete trust in anyone of the doctors that are on the team, I mean we know that they're doing whatever is best for our child… (DeeDee) and most of them we have known for 23 years.

DeeDee and Larry

Since Kyle was born there has been so many advances in treatments and medicine that's just there's medicines that Kyle has not even tapped into because he's been so healthy and Kayla too, she's you know for all that she has gone through… you know there are still medicines that she hasn't even… even… you know they haven't tried on her so… ya there is a lot of hope and… and for the future for the kids for our kids and for all kids with CF.

DeeDee and Larry

(DeeDee) We just try to keep them and treat them as normally as possible we didn't shelter them we just…ya kept them active and… and never give up hope there is always another tomorrow.

Health Happens:
A Team Effort

One of the greatest lessons learned in raising a child with cystic fibrosis is the realization that you are not in this by yourself. For most parents, that overwhelming sense of solitude begins to fade the moment they walk into a Cystic Fibrosis Foundation-accredited care center and meet the medical team.

The center of your universe

The Cystic Fibrosis Foundation accredits more than 115 cystic fibrosis care centers, pediatric and adult programs, worldwide. Working within each center is a team of health care professionals who specialize in CF -- doctors, nurses, nutritionists, pulmonologists, gastrologists and psychosocial specialists. They are ready to walk this journey with you and your family.

The National Institutes of Health credit the remarkable advances made in the life expectancy of cystic fibrosis patients over the last few decades, in large part, to the effectiveness of these centers. The center's medical professionals offer cutting-edge care and become an extended network of support in your life, providing that intangible medicine that is key to anyone living with CF — hope.

Center professionals also collect information from the patients they see and share that data in a national patient registry. Care providers and researchers around the world then use the registry to advance their understanding and treatment of the condition.

An ounce of prevention

If you are a caregiver for someone with CF, you know about the power of good nutrition, daily exercise and a firm commitment to treatment. Over the years, children need to be taught the how and why of these important elements in order to achieve optimal growth. Adults with CF still need to be reminded, and sometimes prodded, to do the right thing when it comes to diet, treatments and exercise.

Good nutritional counseling can help; particularly since diet and lung health are closely linked. A CF patient's health depends on a high-calorie, high-fat diet, but what is the best way to get that? Your clinic dietitian will help you create a successful nutritional plan that changes as your child or your partner's needs change.

Say "Yes" to treatment

You are raising children, going to doctor's appointments, filling prescriptions, performing physical therapy on your child and phoning the CF clinic when you're not sitting in its waiting room. It's an exhaustive routine, but you remain diligent about treatment because you know how essential it is to your child's survival.

Compliance with daily treatments is of utmost importance to people with CF. Helping patients understand that they have some control over their health through their commitment to treatment can be key to inspiring compliance in both children and adults.

Non-compliance is an issue that many CF families face, particularly as children enter their teen years, yearn to fit in with their peers, and find it hard to believe that poor choices made today can cost years down the road. Your CF medical team is your best ally during this time, having the experience to guide families through these tumultuous years.

Ready, set, exercise!

Giving your lungs a good workout helps make any body strong. For someone with CF, a cardiovascular routine can also act as natural chest physiotherapy, helping to loosen mucus and promote coughing.

Exercise is child's play for the littlest CF patients. A half hour in the back yard may include running, jumping and a serious game of hopscotch -- just the kind of activity important to the health of your child's lungs.

Adult patients can find cardiovascular and lung health in playtime, too. A heated tennis match, a scenic bicycle ride or an in-line skate through the park put the fun back into daily exercise and contribute to healthier lungs.

The great communicator

Since cystic fibrosis is often a mystery to those not living with the condition, (how many times have you been asked, "Is that anything like MS?"), good health sometimes depends on your ability to communicate your child or your partner's needs to friends, family and teachers.

For instance, letting your child's teacher know that colds and coughs in the classroom can send your son or daughter to the hospital is important. The teacher might then send out a letter to fellow parents asking them to be more diligent about keeping sick children at home. Keeping quiet about your child or your partner's cystic fibrosis can be dangerous to their health. Inform and educate those people orbiting your family planet.

The best health happens when you and the person with CF are proactive about visiting the doctor, eating well, exercising and staying on top of treatments. Let love be your motivator, friends and family be your extra hands, and the medical team at clinic be your partners in good health.