Cystic Fibrosis (CF) Care in Grand Rapids, Michigan

Cystic fibrosis (CF) is a life‑limiting genetic disorder that affects multiple organs, especially the:

  • Respiratory system (lungs)
  • Digestive system (pancreas and sometimes liver)
  • Reproductive system

For families in Grand Rapids, Michigan, understanding cystic fibrosis, how it is diagnosed, and what local treatment options are available can help you make informed decisions and access the right care.

What Is Cystic Fibrosis?

In people with cystic fibrosis, the body produces very thick, sticky mucus instead of thin, slippery mucus. This abnormal mucus:

  • Clogs small airways in the lungs
  • Traps bacteria and leads to frequent lung infections
  • Blocks ducts in the pancreas, preventing digestive enzymes from reaching the small intestine

Over time, this can cause:

  • Irreversible lung damage
  • Chronic breathing problems
  • Poor digestion and nutrition issues

CF is a genetic condition, meaning it is inherited and present from birth. There is currently no cure, but treatments continue to improve, and many people with CF live into adulthood with the help of specialized care.

How Cystic Fibrosis Affects the Body

Lungs and Breathing

Thick mucus in the lungs makes it hard to clear secretions. This can lead to:

  • Persistent cough, sometimes with thick mucus
  • Difficulty breathing and shortness of breath
  • Wheezing
  • Frequent lung and sinus infections
  • Reduced ability to exercise or keep up with peers

In West Michigan, cold, damp winters and frequent respiratory viruses can make breathing issues worse for people with CF. It is especially important to stay up to date on vaccines (such as flu and COVID‑19) and to work closely with a pulmonologist.

Digestive System and Nutrition

In CF, thick mucus can block the ducts of the pancreas. This prevents digestive enzymes from reaching the small intestine, where they help break down fats and absorb nutrients. As a result, people with CF may experience:

  • Poor growth or difficulty gaining weight
  • Poor appetite
  • Frequent, bulky, greasy stools
  • Diarrhea or constipation
  • Vitamin deficiencies
  • CF‑related diabetes

Because of these issues, many people with CF need:

  • A diet high in calories, protein, fats, and salt
  • Pancreatic enzyme replacement capsules with meals and snacks
  • Vitamin supplements

In Grand Rapids, where winters are long and sunlight is limited, vitamin D deficiency can be more common. Your CF care team may monitor and supplement vitamin D and other nutrients as needed.

Reproductive System

CF can affect fertility:

  • Many males with CF are infertile due to blocked or absent vas deferens, but they still produce sperm and may have options with assisted reproductive technologies.
  • Some females with CF may have thicker cervical mucus that can make it harder to conceive, though many are able to become pregnant with proper medical support.

Discuss family planning with a CF specialist or genetic counselor if you or your partner has CF or is a known carrier.

How Common Is Cystic Fibrosis?

  • CF is one of the most common life‑limiting genetic disorders among people of European ancestry in the United States.
  • About 1 in 25 people carry a single copy of the CF gene change (mutation) but do not have symptoms.
  • Each pregnancy between two CF carriers has:
    • A 1 in 4 (25%) chance the child will have CF
    • A 1 in 2 (50%) chance the child will be a healthy carrier
    • A 1 in 4 (25%) chance the child will not have CF and will not be a carrier

People who carry only one copy of the CF gene change are healthy and often unaware they are carriers.

Newborn Screening and Diagnosis in Michigan

In Michigan, including Grand Rapids and Kent County, most babies are screened for cystic fibrosis shortly after birth as part of the state’s newborn screening program.

Newborn Screening

Newborn screening typically involves:

  1. Heel prick blood test

    • A small blood sample is taken from the baby’s heel.
    • The sample is checked for elevated levels of a substance called immunoreactive trypsin (IRT).

  2. Genetic testing (if IRT is high)

    • If IRT is very high, the blood may be tested for common CF gene changes.

Screening does not confirm CF, but it identifies babies who need further testing.

Confirming the Diagnosis: Sweat Test

If screening suggests CF, a sweat test is usually performed:

  • This measures the amount of salt (sodium chloride) in the sweat.
  • High salt levels in the sweat are a strong indicator of CF.
  • Most children with CF are now diagnosed within the first two months of life.

Some babies may also be diagnosed early because of meconium ileus, a type of intestinal blockage that can occur soon after birth.

In Grand Rapids, your pediatrician may refer you to:

  • A CF center or pediatric pulmonology clinic at Corewell Health (formerly Spectrum Health)
  • Trinity Health Grand Rapids or Metro Health – University of Michigan Health for specialized testing and follow‑up

Symptoms of Cystic Fibrosis

Symptoms can vary from person to person, but common signs and symptoms of CF include:

  • Persistent cough, sometimes with thick mucus
  • Wheezing or shortness of breath
  • Frequent lung or sinus infections
  • Salty‑tasting skin or very salty sweat
  • Muscle cramps or weakness, especially in hot weather due to salt loss
  • Fatigue, lethargy, or reduced exercise ability
  • Poor growth or difficulty gaining weight despite good appetite
  • Frequent bowel movements
  • Bulky, greasy, or foul‑smelling stools
  • Diarrhea or constipation
  • CF‑related diabetes

If you notice these symptoms in your child, contact your Grand Rapids pediatrician or family doctor for evaluation and possible referral to a CF specialist.

Treatment for Cystic Fibrosis in Grand Rapids

There is currently no cure for cystic fibrosis, but modern treatments focus on:

  • Slowing disease progression
  • Preventing and treating infections
  • Improving nutrition and growth
  • Enhancing quality of life

Treatment can be intensive and time‑consuming, but specialized CF centers in West Michigan provide coordinated care.

Common CF Treatments

  • CFTR modulator medications

    • These target the underlying CFTR protein defect in certain gene mutations.
    • They can significantly improve lung function, weight gain, and overall health in eligible patients.

  • Airway clearance techniques (chest physiotherapy)

    • Manual chest physiotherapy or mechanical vests help loosen and clear mucus from the lungs.

  • Inhaled medications

    • Bronchodilators to open airways
    • Mucus‑thinning medications
    • Inhaled antibiotics to treat or prevent lung infections
    • Often given via a compressor and nebulizer at home

  • Antibiotics

    • Oral, inhaled, or intravenous antibiotics to manage bacterial infections in the lungs.

  • Pancreatic enzyme replacement therapy (PERT)

    • Capsules taken with meals and snacks to help digest fats and absorb nutrients.

  • Nutritional support

    • High‑calorie, high‑protein, high‑fat diet
    • Vitamin supplements (especially fat‑soluble vitamins A, D, E, K)
    • Salt supplements, particularly in hot or humid weather or during exercise

  • Feeding tube (PEG – percutaneous endoscopic gastrostomy)

    • A flexible feeding tube placed through the abdominal wall into the stomach.
    • Used if weight gain or nutrition remains poor despite oral intake.

  • Regular exercise

    • Improves lung function, mucus clearance, and overall fitness.
    • In Grand Rapids, indoor options (gyms, community centers, school sports) are helpful during cold winters when outdoor activity is limited.

Local CF Care and Clinics

Regular follow‑up at a major CF clinic is strongly recommended. In the Grand Rapids area, CF care may be available through:

  • Corewell Health (Spectrum Health) Helen DeVos Children’s Hospital – pediatric CF and pulmonology services
  • Trinity Health Grand Rapids – adult and pediatric pulmonary and respiratory care
  • Metro Health – University of Michigan Health – pulmonary and specialty care
  • Mercy Health clinics and affiliated specialists in West Michigan

Ask your primary care provider for a referral to a CF center experienced in managing cystic fibrosis.

Carrier Testing and Family Planning in Grand Rapids

People who carry a single copy of the CF gene change are healthy and typically have no symptoms. However, if both partners are carriers, there is a 25% chance with each pregnancy that their child will have CF.

Who Should Consider Carrier Testing?

You may want CF carrier testing if:

  • CF runs in your family
  • Your partner is a known CF carrier or has CF
  • You are planning a pregnancy and want to understand your risk

Carrier testing is done with a blood test or cheek swab that looks for common CF gene changes.

Genetic Counseling

Genetic counselors are trained health professionals in both genetics and counseling. They can help you:

  • Understand how CF is inherited
  • Interpret carrier or genetic test results
  • Discuss risks for current or future pregnancies
  • Explore reproductive options and prenatal testing
  • Receive emotional support and guidance

In Grand Rapids and across Michigan, genetic counseling services may be available through:

  • Hospital‑based genetics clinics (e.g., Corewell Health, Trinity Health Grand Rapids, Metro Health)
  • Telehealth genetic counseling services
  • Referrals from your OB‑GYN or primary care provider

Living With Cystic Fibrosis in West Michigan

Living with CF in Grand Rapids means managing a chronic condition in a region with:

  • Cold, long winters – which can increase respiratory infections and make airway care especially important.
  • Seasonal changes and humidity – which can affect mucus thickness and salt loss.
  • Access to strong regional healthcare systems – including major hospitals and specialty clinics.

People with CF and their families benefit from:

  • A consistent daily treatment routine
  • Strong relationships with their CF care team
  • Emotional and social support
  • Planning for school, work, and physical activity

Support and Resources for CF in Grand Rapids, MI

In addition to your healthcare team, you may find support through:

  • Kent County Health Department

    • Public health information, immunization clinics, and community resources.

  • Grand Rapids Public Health and local clinics

    • Supportive services, nutrition counseling, and referrals.

  • Michigan‑based genetic and rare disease networks

    • Many state and regional organizations connect families with genetic counselors, support groups, and educational resources.

Ask your CF clinic, pediatrician, or pulmonologist about:

  • Local and online CF support groups
  • Mental health services familiar with chronic illness
  • Social workers who can help with insurance, school accommodations, and transportation to appointments

When to Seek Medical Help

Contact your Grand Rapids healthcare provider, urgent care, or local emergency department (such as at Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health) if you or your child with CF experiences:

  • Sudden or worsening shortness of breath
  • Chest pain
  • High fever or signs of severe infection
  • Marked drop in appetite or weight
  • Severe abdominal pain or no bowel movements in a newborn
  • Signs of dehydration (dry mouth, reduced urination, extreme fatigue)

For non‑emergency concerns, schedule an appointment with:

  • Your primary care doctor or pediatrician
  • Your CF specialist or pulmonologist
  • A genetic counselor if you have questions about family risk or testing

Key Points About Cystic Fibrosis in Grand Rapids

  • Cystic fibrosis is a life‑limiting genetic disorder that mainly affects the lungs, digestive system, and reproductive system.
  • Thick, sticky mucus leads to recurrent lung infections, breathing problems, and difficulty absorbing nutrients.
  • CF is inherited; carriers have no symptoms but can pass the gene to their children.
  • Newborn screening in Michigan allows most babies with CF to be diagnosed within the first few months of life.
  • There is currently no cure, but modern treatments, including CFTR modulators, airway clearance, nutritional support, and regular exercise, can significantly improve quality of life.
  • Grand Rapids residents with CF have access to major healthcare systems, CF specialists, and public health resources throughout West Michigan.