The Cystic Fibrosis Support Center

Every person is unique, but when you face a challenge like cystic fibrosis (CF), you are not alone. Countless children and adults have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.

TSC has scoured the Web and assembled links to the very best cystic fibrosis resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges that you face.

As you’ll see, we always welcome your ideas and suggestions to make this cystic fibrosis guide even more helpful to survivors like you.

JUST FOUND OUT

Suvivors Say: The Best Resources for Cystic Fibrosis

• Cystic Fibrosis Foundation The Foundation is an excellent resource as you start to understand this inherited, chronic disease that affects the lungs and digestive system.
  
• CysticFibrosis.com This site has forums, blogs, and sound advice on nutrition, fitness, and living with CF, plus much more. You'll also find inspiring video testimonials from other CF survivors.
  
• MedlinePlus: Cystic Fibrosis This page from the National Institutes of Health gathers together links from all over the Web to help deliver the best and the latest thinking about this disease.

The Big Picture

This brief overview of this genetic condition comes from the National Heart Lung and Blood Institute (NHLBI):

What is Cystic Fibrosis?

CF typically most affects the respiratory (breathing) system of the body, but there are other symptoms as well:

NHLBI: What Are the Signs and Symptoms of Cystic Fibrosis?

Your Cystic Fibrosis

Surviving any disease or condition, including CF, requires understanding how the disease may manifest itself over the course of your life, and what you can do to stay healthy:

Cystic Fibrosis Foundation: Living with Cystic Fibrosis

If you're the parent of a baby or child who's just been diagnosed with CF, and even if you received the diagnosis yourself later in life, there's no doubt you have plenty of questions running through your head. Here, from Dr.Koop.com, are several to consider asking your physician:

What Questions to Ask Your Doctor About Cystic Fibrosis 

Your World

Coping with a diagnosis of cystic fibrosis in your child, or if you received the diagnosis yourself as a teen or adult, can be very difficult:

• Mayoclinic.com - Cystic Fibrosis: Coping and Support 
  
• Organizedwisdom.com - Cystic Fibrosis Support Groups and Foundations
  

Support groups aren't for everyone, but you might want to consider the active, supportive forums at Cysticfibrosis.com:

Cystic Fibrosis Patient Forums

Cystic Fibrosis Myths

• "Only Caucasian people carry the cystic fibrosis gene."
• "CF is diagnosed only in children."
• "People with cystic fibrosis often look thin and emaciated."

Information and Recommended Links for Survivors

Survivors say these are the best guides; check them out for more of your options

• CysticFibrosis.com
• NHLBI: Living with Cystic Fibrosis

Types of Treatment for Cystic Fibrosis

Medications

Drugs like antibiotics, mucus-thinners and bronchodilators that help clear the airways so you can breathe more usually are usually the focus of treatment for CF, though the treatment plan your doctor recommends for you may vary from someone else's. Here's more on how drugs can help:

Cystic Fibrosis Foundation: What treatments or therapies are available?

Lung Transplantation

A lung transplant won't cure CF, but it can help some patients. Here's more of what you need to know if you're considering this aggressive treatment:

Cystic Fibrosis Foundation - Lung Transplantation

Holistic Treatment for Cystic Fibrosis

Probiotics, herbs, and acupuncture are sometimes used to treat CF, or as a complementary therapy to traditional medicine:

• About.com: Alternative Treatments for Cystic Fibrosis
  
• University of Maryland Medical Center: Complementary Medicine - Cystic Fibrosis

Resources to Find Doctors & Hospitals in Your Area

You can find an accredited Cystic Fibrosis Care Center in your state by searching at the Cystic Fibrosis Foundation site:

CF Foundation-Accredited Care Centers

Pulmonologists deal with diseases and disorders of the lungs. Here are a couple of sources to help you find one in your area:

• Pulmonologychannel.com: Find a Pulmonologist/Pulmonary Doctor
• Healthgrades.com: Find Local Pulmonary Doctors/Pulmonologists

Getting Older with Cystic Fibrosis

Cystic fibrosis survivors are living longer than ever before. You can find help from others who are your age - and maybe even older - and share your own advice about what's helped you live longer and healthier with CF:

CFvoice.com: Cystic Fibrosis Community

Information and Recommended Links for Co-Survivors

How Can You Help

• Help your child learn to cough up mucous.
• Raise awareness and funding for cystic fibrosis research.
• Help young CF survivors deal with their fears about the disease and learn ways to ease their discomfort.

What to Say

• Ask your survivor how he/she is feeling and to share how they're feeling about their illness; this is especially important for children.
• Encourage your survivor to participate in social activities and to keep as normal a daily routine as possible.

What Not to Say

• Unless your survivor wants to discuss it, don't dwell on statistics on life expectancy for those with CF.
• “Is CF contagious? I don't want to catch it.”

Things You Can Do for a Survivor Every Day

• Share your love for them. Let them know that they are inspiring in their fight to stay healthy.
• Offer percussive therapy to children who need help breaking up mucous.
• Encourage survivors to take up new activities, and to exercise (if you've gotten the okay from a physician).

Helping a CF Survivor Deal With Day-to-Day Challenges

• If your child is at school encourage them to participate in everything they can and ask their teacher if you can take some time to explain cystic fibrosis to your child's classmates.
• Cystic Fibrosis Services, a subsidiary of the Cystic Fibrosis Foundation, offers excellent information about how to meet challenges at work and school.

How to Build a Support Network

• Set up your TSC co-survivor profile.
• Create a support group for your loved one, or encourage them to try an online group on an in-person group of other CF survivors.
• Interact with others, share stories and offer advice to help other survivors and co-survivors.

Though there is no cure for cystic fiibrosis, the average life expectancy continues to improve with advances in research. CF survivors can live quality lives for many years.

Living Life to the Fullest With Cystic Fibrosis

It's important to do all you can to stay healthy by making good choices for diet, exercise, and exposure to anything that might lead to a lung infection.  Pursuing optimal health will also lead to a more normal lifestyle where CFsurvivors can truly thrive:

Cystic Fibrosis Foundation - Staying Healthy

Giving Back

• Create a TSC survivor profile.
• Share your story -- including your successes and your struggles -- with other survivors and co-survivors.
• Become a mentor to another survivor.

Living Beyond Life Expectancy

A diagnosis of cystic fibrosis offers no guarantees. Though the average life expectancy is now around 37 years, new findings about the disease and its treatment means that number is improving all the time. Sometimes, though, there are no more treatments to help and you may be facing the worst news of all.

Steps to Take When Facing Death

What to Expect

Preparing for end-of-life is everyone's biggest fear. Here's some advice about what to consider now, from Seton.net/Healthwise Health Library:

• Care at the End of Life
  
• Caring Connections: Hospice

Grief & Bereavement

• Griefnet.org: A Community of Persons Dealing with Grief, Death and Major Loss
• The Grief Recovery Institute