Fibrous Dysplasia Care in Grand Rapids, MI

Fibrous dysplasia is a rare bone disorder that causes abnormal growth or swelling of bone. Over time, the affected bone can become enlarged, brittle, and misshapen. While fibrous dysplasia can affect any bone in the body, it most often involves:

  • Skull and facial bones
  • Thigh (femur)
  • Shin (tibia)
  • Ribs
  • Upper arm (humerus)
  • Pelvis

In Grand Rapids, fibrous dysplasia is typically evaluated and managed by specialists in major health systems such as Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health.

Who Gets Fibrous Dysplasia?

Fibrous dysplasia is usually diagnosed in childhood or early adulthood, often before age 30. It can affect:

  • One bone (monostotic fibrous dysplasia)
  • Multiple bones (polyostotic fibrous dysplasia)

Males and females of all races are affected equally.

Fibrous dysplasia:

  • Is not cancer
  • Does not usually turn into cancer
  • Does not increase cancer risk in most people

In some individuals, fibrous dysplasia is associated with hormone problems and changes in skin color, especially in a condition called McCune‑Albright syndrome.

Is Fibrous Dysplasia Curable?

Fibrous dysplasia is not curable, but it can often be effectively managed with:

  • Medical treatment
  • Surgery when needed
  • Physical therapy and exercise
  • Ongoing monitoring

Some people in the Grand Rapids area discover they have fibrous dysplasia by accident, such as when they have an X‑ray or CT scan for another reason after a fall on the ice in winter or a sports injury.

Symptoms of Fibrous Dysplasia

Some people have no symptoms at all. When symptoms do occur, they may include:

  • Bone pain (often dull and aching, can worsen with activity or cold weather)
  • Increased risk of bone fractures
  • Irregular bone growth or deformity
  • Unusual gait, such as a “waddling” or rocking walk
  • Limb length differences if leg bones are affected
  • Joint problems (especially hips and knees), sometimes leading to early arthritis

If the skull or facial bones are affected, symptoms may include:

  • Vision changes or eyesight problems
  • Hearing changes or loss
  • Facial asymmetry or swelling
  • Headaches

Because Grand Rapids experiences cold, icy winters, people with fibrous dysplasia may be more prone to falls and fractures. Extra attention to fall prevention and safe footwear is important.

Types of Fibrous Dysplasia

Monostotic Fibrous Dysplasia (One Bone Affected)

  • Most common type – about 70% of cases
  • Only one bone is involved
  • The skull is a frequent site, but it can occur in any bone
  • May be discovered incidentally on imaging

Polyostotic Fibrous Dysplasia (Two or More Bones Affected)

  • Multiple bones are involved
  • Symptoms are often more severe
  • Higher risk of deformity, fractures, and functional problems
  • People with polyostotic disease have a higher chance of also having McCune‑Albright syndrome

McCune‑Albright Syndrome

McCune‑Albright syndrome is a specific condition in which fibrous dysplasia occurs along with hormone and skin changes. It is caused by the same underlying gene change as fibrous dysplasia but has more widespread effects.

Common features include:

  • Fibrous dysplasia in multiple bones
  • Café‑au‑lait spots – light to dark brown skin patches with irregular (“coast of Maine”) borders
  • Early puberty (onset before age 8 in girls or 9 in boys)
  • Overactive endocrine glands, such as:
    • Overactive pituitary gland (can lead to abnormal height or growth)
    • Overactive thyroid gland (hyperthyroidism)
    • Other hormone imbalances

People with polyostotic fibrous dysplasia in West Michigan should be evaluated for possible McCune‑Albright syndrome, especially if they have skin changes or early puberty.

What Causes Fibrous Dysplasia?

Fibrous dysplasia is caused by a change (mutation) in the GNAS1 gene.

Key points about this gene change:

  • It makes the GNAS1 gene more active than usual.
  • It is not inherited from your parents.
  • It is not present at conception.
  • It develops early in embryo development, during one of the first cell divisions.

Because the gene change occurs after conception:

  • Only some of the body’s cells carry the mutation.
  • The effects may be limited to one area or several bones.

The same mechanism causes McCune‑Albright syndrome, but in that condition, the gene change affects more cells and more body systems.

How Is Fibrous Dysplasia Diagnosed in Grand Rapids?

Fibrous dysplasia can sometimes mimic other conditions. For example, fibrous dysplasia in the spine (vertebrae) may be mistaken for idiopathic scoliosis.

A diagnosis is usually made using a combination of:

  • Medical history – including pain history, fractures, growth problems
  • Physical examination – checking for deformities, limb length differences, gait changes
  • Blood tests – to assess bone turnover and check for hormone problems
  • X‑rays – often show a characteristic “ground‑glass” appearance in affected bones
  • CT scan or MRI – to better define bone structure and involvement, especially in the skull and spine
  • Bone biopsy – a small sample of bone is taken and examined under a microscope to confirm the diagnosis

In Grand Rapids, these tests are typically done through hospital systems such as Corewell Health, Trinity Health Grand Rapids, Metro Health, or Mercy Health, often in collaboration with orthopedic, endocrinology, and radiology specialists.

Possible Complications of Fibrous Dysplasia

Not everyone develops complications, but potential problems include:

  • Frequent fractures
  • Bone deformities (bowed legs, facial asymmetry, limb length differences)
  • Arthritis, especially if the hips, knees, or pelvis are affected
  • Rickets‑like changes in children due to abnormal bone mineralization
  • Nerve compression – if bone expansion presses on:
    • Brain or spinal cord
    • Cranial nerves (vision, hearing, facial movement)
  • Chronic pain, which can affect daily activities, work, and sleep

Because Michigan winters can increase the risk of falls on snow and ice, people with fibrous dysplasia in Grand Rapids should talk with their care team about fall prevention, home safety, and appropriate footwear.

Treatment Options for Fibrous Dysplasia in Grand Rapids

Treatment is individualized and depends on:

  • Age
  • Which bones are affected
  • Severity of symptoms
  • Presence of hormone or endocrine problems

Most people are treated by a multidisciplinary team that may include:

  • Orthopedic surgeon – for bone deformities and fractures
  • Plastic or craniofacial surgeon – for facial or skull involvement
  • Neurosurgeon – if the spine, brain, or nerves are compressed
  • Endocrinologist – for hormone imbalances and McCune‑Albright syndrome
  • Physical therapist – for mobility, strength, and safe exercise
  • Pain specialist – for chronic pain management

Medical Treatment

Medical management may include:

  • Medications to strengthen bone
    • Often drugs used for osteoporosis (such as bisphosphonates)
    • May help reduce bone pain and lower fracture risk
  • Pain management
    • Over‑the‑counter pain relievers as advised by your doctor
    • Prescription medications when needed
    • Non‑drug therapies such as heat, ice, and physical therapy
  • Treatment of hormone imbalances (especially in McCune‑Albright syndrome)
    • Medications to manage thyroid, pituitary, or other hormone issues
  • Monitoring for complications
    • Regular imaging and lab tests
    • Eye and hearing checks when skull bones are involved

Surgery for Fibrous Dysplasia

Surgery may be recommended when:

  • Bones are painful or repeatedly fractured
  • There is significant deformity affecting function or appearance
  • Joints can no longer move freely
  • There is pressure on the brain, spinal cord, or major nerves

Common surgical approaches:

  • Removing diseased bone where possible
  • Bone grafting – using healthy bone from another part of the body or donor bone to strengthen the area
  • Internal fixation – using pins, rods, plates, or screws to stabilize and support weakened bones
  • Corrective osteotomy – cutting and realigning bone to improve function and appearance

Surgery may be especially effective when only one bone is affected. When multiple bones are involved, it may not be possible to remove all affected areas, but surgery can still improve function and reduce pain.

Specialized surgical care for fibrous dysplasia is available through major Grand Rapids centers such as Corewell Health, Trinity Health Grand Rapids, and Metro Health – University of Michigan Health.

Exercise and Daily Living in West Michigan

Regular weight‑bearing exercise is important to:

  • Strengthen bones
  • Improve joint mobility
  • Maintain a healthy weight
  • Support heart and overall health

However, because people with fibrous dysplasia have a higher fracture risk, exercise plans should be:

  • Individually designed with guidance from your healthcare team
  • Supervised or planned with a physical therapist
  • Adjusted for seasonal conditions in Michigan, including:
    • Indoor options during icy or snowy months
    • Safe footwear and traction when walking outdoors in winter
    • Avoiding high‑impact or high‑fall‑risk activities unless cleared by your doctor

Safe activities may include:

  • Walking on stable, dry surfaces
  • Stationary cycling
  • Swimming or water aerobics
  • Gentle strength training under supervision

Genetic Counseling and Support in Grand Rapids

If you or a family member has been diagnosed with fibrous dysplasia or McCune‑Albright syndrome, genetic counseling can be very helpful.

Genetic counselors are trained in both genetics and counseling. They can:

  • Explain what fibrous dysplasia is and what causes it
  • Clarify what the diagnosis means for your health and your child’s development
  • Discuss the chance of the condition affecting other family members
  • Provide emotional support and help with coping strategies
  • Connect you with support groups and community resources in Michigan

Although fibrous dysplasia is not typically inherited, families often benefit from clear, personalized information and support.

Local Resources and Support in Grand Rapids, MI

Residents of Grand Rapids and Kent County have access to multiple resources:

Medical Care

  • Primary care providers (GPs/family doctors) – first point of contact for symptoms, referrals, and ongoing care
  • Orthopedic surgeons – available through Corewell Health, Trinity Health Grand Rapids, Metro Health, and Mercy Health
  • Endocrinologists – for hormone and metabolic issues, particularly in McCune‑Albright syndrome
  • Neurosurgeons and plastic surgeons – for complex skull, spine, or facial involvement

Public Health and Community Resources

  • Kent County Health Department – information on general health resources and referrals
  • Grand Rapids Public Health and local hospital education programs – may offer classes on bone health, fall prevention, and chronic disease management

Genetic and Rare Disease Support

  • Genetic Support Network of Michigan (GSNM) – statewide organization offering information, advocacy, and connection with other families affected by genetic conditions
  • Hospital‑based clinical genetics services – available through major Grand Rapids health systems for evaluation, diagnosis, and counseling

If you are unsure where to start, your primary care provider or orthopedic specialist in Grand Rapids can help coordinate referrals to the appropriate specialists and support services.

Key Points About Fibrous Dysplasia in Grand Rapids

  • Fibrous dysplasia is a rare bone disorder that causes abnormal bone growth and swelling.
  • It is not cancer and usually does not increase cancer risk.
  • The condition can affect one bone (monostotic) or multiple bones (polyostotic).
  • Some people have no symptoms; others may experience pain, fractures, deformity, and gait changes.
  • A related condition, McCune‑Albright syndrome, includes fibrous dysplasia plus hormone problems and café‑au‑lait skin spots.
  • Diagnosis involves history, exam, blood tests, imaging, and sometimes bone biopsy.
  • Treatment in Grand Rapids may include medications, surgery, physical therapy, and careful monitoring.
  • Safe, supervised exercise is important but must be tailored to reduce fracture risk, especially with Michigan’s winter conditions.
  • Genetic counseling and local support networks in Michigan can help individuals and families understand and manage the condition.

Residents of Grand Rapids who notice persistent bone pain, frequent fractures, or unusual bone growth should contact their primary care provider or an orthopedic specialist for evaluation and referral to appropriate local resources.