McCune‑Albright Syndrome Care in Grand Rapids, Michigan

McCune-Albright syndrome is a rare genetic condition that affects bone growth, skin pigmentation, and the body’s hormone balance. Children and adults with McCune‑Albright syndrome may have fragile bones, changes in facial or skull shape, and early (premature) sexual development.

In Grand Rapids, Michigan, families affected by McCune‑Albright syndrome can access specialized care through major health systems such as Spectrum Health (Corewell Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health, as well as public health support from the Kent County Health Department.

Symptoms of McCune‑Albright Syndrome

Symptoms Can Range From Mild to Severe

The symptoms of McCune‑Albright syndrome vary widely from person to person:

  • Some babies show signs in infancy, such as obvious bone deformities or large birthmarks.
  • Other children may appear healthy for years, with symptoms only becoming clear later in childhood or adolescence.

Because of this wide range, it is difficult to predict how severely a child in Grand Rapids with McCune‑Albright syndrome will be affected over their lifetime.

There is currently no cure for McCune‑Albright syndrome, but many symptoms can be managed with coordinated care.

Common Signs and Symptoms

Key features of McCune‑Albright syndrome include:

Bone Changes (Polyostotic Fibrous Dysplasia)

  • Polyostotic fibrous dysplasia: abnormal growth and weakening of two or more bones.
  • Commonly affected bones:
    • Skull and facial bones
    • Arms
    • Legs
    • Ribs and pelvis
  • Possible effects:
    • Bone pain
    • Bowed or misshapen bones
    • Uneven leg length
    • Increased risk of fractures, especially in winter when icy Grand Rapids sidewalks and driveways raise fall risk

Skin Pigmentation (Café au Lait Spots)

  • Café au lait birthmarks are often the first sign:
    • Usually on the abdomen, back, or trunk
    • Flat, light-brown (“coffee with milk”) patches
    • Oval in shape with a jagged or irregular outline
  • In people with lighter skin, these spots are usually easy to see.
  • In people with darker skin (including many Grand Rapids residents in Black and Hispanic communities), the spots can be more subtle and harder to notice.

Hormone (Endocrine) Problems

McCune‑Albright syndrome can affect several hormone-producing glands, leading to:

  • Premature sexual maturity (precocious puberty)
    • Can affect both girls and boys, but is much more common in girls
    • Girls may have:
      • Menstrual periods at a very young age (sometimes before age 8)
      • Breast development and vaginal bleeding that occur out of the usual order (for example, periods before breast or pubic hair growth)
      • Ovarian cysts, which are thought to trigger early menstruation
    • Boys may have:
      • Early enlargement of the testicles
      • Early development of pubic hair
      • Rapid growth and early muscle development
  • Overactive thyroid (hyperthyroidism)
    • Symptoms may include:
      • Rapid heartbeat
      • Unexplained weight loss
      • Heat intolerance (can be especially noticeable during humid West Michigan summers)
      • Tremors or nervousness

Complications of McCune‑Albright Syndrome

Without careful monitoring and treatment, McCune‑Albright syndrome can lead to several complications. In Grand Rapids, these are typically managed by a team that may include pediatric endocrinologists, orthopaedic surgeons, and other specialists at Spectrum Health, Trinity Health Grand Rapids, or Metro Health.

Bone and Skeletal Complications

  • Brittle, warped bones (osteoporosis)
  • Repeated fractures
  • Rickets (soft, weak bones), especially if vitamin D is low during long Michigan winters with limited sunlight
  • Osteitis fibrosa cystica: soft bones that are prone to developing cysts
  • Abnormal skull growth that can lead to:
    • Vision loss or blindness
    • Hearing loss or deafness
  • Mobility problems or disabilities due to:
    • Bone deformities
    • Asymmetry of the skeleton
    • Leg length differences

Growth and Height

  • Arrested growth in childhood (shorter adult height) due to:
    • Early closure of growth plates from precocious puberty
    • Bone disease
  • In rare cases, excessive growth (gigantism) can occur due to too much growth hormone, often affecting:
    • Hands
    • Feet
    • Facial features

Adrenal Gland Problems and Cushing’s Syndrome

McCune‑Albright syndrome can cause enlargement of the adrenal glands (located above the kidneys) and overproduction of cortisol, leading to Cushing’s syndrome.

Symptoms of Cushing’s syndrome can include:

  • Obesity and weight gain around the abdomen
  • Thin arms and legs (wasting of the limbs)
  • A “hump” of fat high on the back (buffalo hump)
  • Round, red, puffy face (“moon face”)
  • Thin, easily bruised skin
  • Slow healing of cuts or scrapes
  • Skin ulcers

In Grand Rapids, Cushing’s syndrome related to McCune‑Albright syndrome is typically managed by endocrinologists and, when needed, endocrine surgeons.

Causes of McCune‑Albright Syndrome

McCune‑Albright syndrome is caused by a change (mutation) in a gene called GNAS1.

  • The gene change makes the GNAS1 gene more active than normal.
  • The mutation:
    • Is not inherited from the parents
    • Is not present at conception
    • Occurs spontaneously during early cell divisions in the developing embryo

Because the change happens after conception:

  • Only some of the body’s cells carry the mutation.
  • Other cells remain normal.
  • This pattern is called mosaicism.

Can It Be Passed to Children?

  • People with McCune‑Albright syndrome do not pass the condition on to their children.
  • Despite hormone irregularities, most women with McCune‑Albright syndrome are fertile and can have children.
  • The exact reason the gene change occurs is not known.

Diagnosis of McCune‑Albright Syndrome in Grand Rapids

If a child in Grand Rapids has symptoms such as early puberty, unexplained fractures, or café au lait spots, their pediatrician or family doctor may refer them to specialists at local centers such as:

  • Spectrum Health Helen DeVos Children’s Hospital
  • Trinity Health Grand Rapids
  • Metro Health – University of Michigan Health

Common Diagnostic Steps

Diagnosis may include:

  • Detailed medical history
    • Growth patterns
    • Timing of puberty
    • History of fractures or bone pain
    • Family history (even though the condition itself is not inherited)
  • Physical examination
    • Checking skin for café au lait spots
    • Assessing bone deformities or asymmetry
  • Blood tests to measure hormone levels from:
    • Thyroid gland
    • Parathyroid glands
    • Adrenal glands
    • Pituitary gland
    • Sex hormones (estrogen, testosterone)
  • Imaging tests
    • X-rays to examine the skeleton for fibrous dysplasia and fractures
    • Bone scans using a small amount of radioactive material to look for affected bones
    • MRI or CT scans to assess the skull, pituitary gland, or other organs
  • Genetic testing for GNAS1 mutations in specialized genetics clinics

Local families can be referred to clinical genetics services through major Grand Rapids health systems or regional genetics programs in Michigan.

Treatment for McCune‑Albright Syndrome in Grand Rapids

There is no cure for McCune‑Albright syndrome, but many symptoms and complications can be managed. Treatment in Grand Rapids is usually coordinated through a multidisciplinary team.

Managing Bone Problems

  • Medication to manage pain
  • Surgery to support and stabilize weak bones:
    • Bone grafts
    • Pins, rods, or plates
    • Casts or braces
  • Bisphosphonate medications to improve bone density and reduce fracture risk
  • Vitamin D supplements to lower the risk of rickets, particularly important in Michigan where long winters can reduce natural vitamin D from sunlight
  • Regular, supervised exercise program:
    • Weight-bearing exercises to strengthen bones
    • Balance training to reduce falls on icy or snowy surfaces
  • Physical therapy to:
    • Maintain or improve joint mobility
    • Support posture and gait
    • Help with assistive devices if needed

Managing Hormone (Endocrine) Problems

Treatment depends on which glands are affected:

  • Precocious puberty
    • Medications to:
      • Slow or block early puberty
      • Reduce estrogen levels in girls
    • Monitoring growth and bone age
  • Ovarian cysts
    • Hormone therapy
    • Surgery to remove cysts in selected cases
  • Hyperthyroidism
    • Antithyroid medications
    • Radioactive iodine therapy or surgery in some cases
  • Growth hormone excess (gigantism)
    • Medications to reduce growth hormone
    • Possible pituitary surgery
  • Cushing’s syndrome
    • Medications to reduce cortisol production
    • Surgery to remove abnormal adrenal glands if needed
    • Treatment of any pituitary tumor with hormone therapy or surgery

Treatment Team for People With McCune‑Albright Syndrome

A person with McCune‑Albright syndrome in Grand Rapids may be cared for by:

  • Primary care physician or pediatrician
  • Endocrinologist (hormone specialist)
  • Pediatric endocrinologist for children
  • Orthopaedic surgeon for bone deformities and fractures
  • Plastic or craniofacial surgeon for facial or skull abnormalities
  • Neurosurgeon for pituitary or skull-related issues
  • Physical therapist and occupational therapist
  • Genetic counselor

Care is often coordinated through children’s specialty centers such as Helen DeVos Children’s Hospital or pediatric specialty clinics at Trinity Health Grand Rapids.

Genetic Counseling and Support in Michigan

If your child has been diagnosed with McCune‑Albright syndrome, meeting with a genetic counselor can be very helpful.

How Genetic Counselors Help

Genetic counselors:

  • Explain:
    • What McCune‑Albright syndrome is
    • How the GNAS1 gene change occurs
    • Why the condition is not inherited
  • Discuss:
    • What the diagnosis means for your child’s health and development
    • Future family planning options
  • Provide:
    • Emotional support
    • Resources tailored to your family’s culture, beliefs, and circumstances
  • Connect families with:
    • Local and Michigan-based support groups
    • National organizations for rare diseases and endocrine disorders

In Grand Rapids and across Michigan, families can access genetic counseling through major hospital systems and statewide genetics programs. The Kent County Health Department and Grand Rapids Public Health can also provide information on local resources and referrals.

Living With McCune‑Albright Syndrome in Grand Rapids

Because Michigan experiences cold, icy winters and hot, humid summers, families in Grand Rapids should consider local environmental factors:

  • Winter safety
    • Prevent falls on ice to reduce fracture risk
    • Ensure homes and schools have safe, accessible walkways
  • Vitamin D
    • Ask your child’s doctor about vitamin D levels, especially during months with limited sunlight
  • Regular follow-up
    • Keep consistent appointments with endocrinology, orthopaedics, and other specialists
  • School and activities
    • Work with school nurses and teachers to:
      • Adjust physical activity as needed
      • Provide accommodations for mobility or vision/hearing issues

Where to Get Help in Grand Rapids, MI

If you are concerned about McCune‑Albright syndrome or your child has been diagnosed, you can start with:

  • Your GP or pediatrician in Grand Rapids
  • Pediatric specialty clinics at:
    • Spectrum Health / Corewell Health (including Helen DeVos Children’s Hospital)
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health locations in West Michigan
  • Endocrinologist
  • Orthopaedic surgeon
  • Plastic or craniofacial surgeon
  • Genetic counselor

You can also ask your care team for referrals to:

  • Michigan-based genetic support organizations
  • National rare disease networks
  • Local parent support groups in the Grand Rapids area

Key Points About McCune‑Albright Syndrome in Grand Rapids

  • Symptoms range widely in severity; some children are diagnosed in infancy, others later in childhood.
  • Hallmark features include fibrous dysplasia of the bones, café au lait birthmarks, and hormone (endocrine) problems such as early puberty and hyperthyroidism.
  • McCune‑Albright syndrome can cause enlargement of the adrenal glands and overproduction of cortisol, leading to Cushing’s syndrome.
  • Complications can include arrested growth in childhood, bone deformities, fractures, and vision or hearing issues.
  • The condition is caused by a spontaneous change in the GNAS1 gene, is not inherited, and is not passed on to children.
  • There is no cure, but with specialized care in Grand Rapids—through Spectrum Health, Trinity Health Grand Rapids, Metro Health, Mercy Health, and local public health resources—many symptoms can be managed, and quality of life can be improved.