Scleroderma Care in Grand Rapids, Michigan

Scleroderma is a long-term disease that affects the body’s connective tissue. The word “scleroderma” means “hard skin,” and one of the most common symptoms is thickening and hardening of the skin, especially on the hands and face. In some people, scleroderma can also affect internal organs such as the lungs, heart, kidneys, and digestive system.

In Grand Rapids and across West Michigan, people living with scleroderma can access specialized care through major health systems like Corewell Health (formerly Spectrum Health), Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health, as well as community resources such as the Kent County Health Department.

What Is Scleroderma?

Connective tissue helps support and hold together the body’s joints, muscles, skin, and internal organs. In scleroderma, the connective tissue makes too much collagen, a protein that helps keep skin and organs strong. This excess collagen causes the skin and sometimes internal organs to harden and tighten.

Scleroderma:

  • Can range from mild and localized to severe and widespread
  • Can affect only the skin or both skin and internal organs
  • Is more common between ages 30 and 60
  • Affects women about three times more often than men
  • Is not contagious – you cannot catch it or pass it to someone else

Although scleroderma is considered a rare disease, thousands of Americans are living with it, including residents of the Grand Rapids metro area.

Types of Scleroderma

Doctors in Grand Rapids typically classify scleroderma into two broad categories based on how much of the body is involved.

Localized Scleroderma

Localized scleroderma mainly affects the skin and the tissues just under it. Internal organs are usually not involved.

There are two main types:

Morphea

  • Patches or plaques of thickened, hard, or shiny skin
  • May appear on the trunk, arms, legs, or face
  • Skin can look discolored (lighter or darker than surrounding skin)
  • May be itchy or uncomfortable

Linear Scleroderma

  • Bands or lines of hardened skin, often on the arms, legs, or forehead
  • Can affect the deeper tissues under the skin, including muscle and bone
  • May limit normal joint movement if it crosses a joint

Localized scleroderma can sometimes restrict movement when the skin over a joint becomes tight and hard. The exact cause is unknown.

Systemic Sclerosis (Systemic Scleroderma)

Systemic sclerosis, also called systemic scleroderma, involves more widespread hardening of the skin and can affect internal organs. It is considered an autoimmune disease, meaning the immune system mistakenly attacks the body’s own tissues.

There are two main forms:

  • Limited cutaneous systemic sclerosis – typically affects the skin of the face, hands, and forearms; internal organ involvement tends to develop more slowly.
  • Diffuse cutaneous systemic sclerosis – affects larger areas of skin on the trunk, arms, and legs; internal organ involvement may occur earlier and be more severe.

Common Symptoms of Scleroderma

Symptoms vary greatly from person to person. In Grand Rapids, people often notice symptoms more during the colder months, when West Michigan’s winter weather can trigger circulation problems.

Common symptoms include:

  • Thickening and hardening of the skin

    • Especially on the hands, fingers, face, and forearms
    • Skin may feel tight, shiny, or difficult to pinch

  • Raynaud’s phenomenon

    • A condition affecting blood flow to the extremities, most often fingers and toes
    • Fingers or toes may turn white, then blue, then red when exposed to cold or stress
    • Can cause numbness, tingling, or pain
    • Especially common in Michigan winters due to cold temperatures and wind chill

  • Joint and muscle problems

    • Stiffness and pain in the muscles or joints (or both)
    • Reduced range of motion, especially in the hands, wrists, and elbows
    • Difficulty with fine motor tasks like buttoning shirts or turning door handles

  • Digestive (gastrointestinal) symptoms

    • Indigestion or heartburn (acid reflux)
    • Trouble swallowing (food feels “stuck”)
    • Bloating, diarrhea, or constipation
    • Unintended weight loss in more severe cases

  • Other possible symptoms

    • Shortness of breath or dry cough if the lungs are affected
    • High blood pressure or kidney problems
    • Fatigue and decreased exercise tolerance

Because symptoms can overlap with other conditions, it’s important to see a healthcare provider familiar with autoimmune and rheumatologic diseases.

What Causes Scleroderma?

The exact cause of scleroderma is not fully understood. Most experts believe it involves a combination of:

  • Overactive immune system – the immune system mistakenly attacks the body’s own tissues, leading to inflammation and excess collagen production.
  • Genetics – certain genes may increase the risk, although scleroderma is not usually directly inherited.
  • Environmental factors – possible triggers such as infections or exposure to certain chemicals have been studied, but none have been definitively proven.

In Raynaud’s phenomenon, which is very common in scleroderma, a sudden constriction (narrowing) of the blood vessels reduces blood flow to the fingers and toes. This can be triggered by:

  • Cold temperatures (a major concern during West Michigan winters)
  • Emotional stress
  • Sudden changes in temperature, such as going from a warm indoor space to the cold outdoors

How Scleroderma Is Diagnosed in Grand Rapids

There is no single test that confirms scleroderma. Instead, doctors in Grand Rapids use a combination of:

  • Medical history and physical examination

    • Review of symptoms, especially changes in skin, circulation, and digestion
    • Examination of skin thickness, joint movement, and nailfold capillaries (tiny blood vessels near the fingernails)

  • Blood tests

    • Tests for specific autoantibodies associated with scleroderma
    • General tests to look for inflammation or organ involvement

  • Imaging and organ tests (as needed)

    • Lung function tests and chest imaging to check for lung involvement
    • Echocardiogram to assess the heart and pulmonary pressures
    • Kidney function tests and blood pressure monitoring

  • Skin or tissue biopsies

    • A small sample of skin or tissue may be taken and examined under a microscope to help confirm the diagnosis.

In Grand Rapids, diagnosis and ongoing care are often coordinated by:

  • Rheumatologists (joint and autoimmune specialists)
  • Dermatologists (skin specialists)
  • With support from immunologists, pulmonologists (lung doctors), cardiologists, and gastroenterologists as needed

These specialists are available through major health systems like Corewell Health, Trinity Health Grand Rapids, Metro Health – University of Michigan Health, and Mercy Health.

Treatment of Scleroderma in Grand Rapids, MI

There is no cure for scleroderma yet, but many people are able to manage their symptoms and maintain a good quality of life with the right care plan. Treatment is tailored to the individual and depends on:

  • The type of scleroderma (localized vs. systemic)
  • Which organs are involved
  • The severity and progression of symptoms

Medications

Your Grand Rapids healthcare provider may recommend:

  • Topical steroid creams or ointments

    • To reduce inflammation and soften thickened skin in localized scleroderma

  • Medications for Raynaud’s phenomenon

    • Drugs that help open blood vessels and improve blood flow to the fingers and toes
    • Important in Michigan’s cold climate to reduce the risk of ulcers and tissue damage

  • Anti-inflammatory and immunosuppressive medications

    • To reduce inflammation and slow immune system overactivity
    • May be used when internal organs, such as the lungs or kidneys, are affected

  • Specialized medications for scleroderma-related complications

    • Treatments for pulmonary hypertension, interstitial lung disease, or severe gastrointestinal symptoms
    • Typically managed by specialists in rheumatology, pulmonology, cardiology, or gastroenterology

Ongoing Monitoring

A person with scleroderma should be monitored regularly by:

  • A rheumatologist or dermatologist as the main coordinating provider
  • Other specialists as needed (immunologist, respiratory physician, gastroenterologist, nephrologist, cardiologist)

Regular follow-up is especially important to:

  • Detect lung, heart, or kidney involvement early
  • Adjust medications as the disease changes
  • Address side effects of treatment

Living With Scleroderma in West Michigan

Managing scleroderma in Grand Rapids often requires both medical treatment and lifestyle adjustments, particularly considering our cold, snowy winters and fluctuating spring and fall temperatures.

Lifestyle Changes

  • Protect yourself from cold temperatures

    • Dress in layers, wear hats, scarves, and insulated gloves or mittens
    • Use hand warmers when outdoors in winter
    • Keep your home comfortably warm and avoid sudden temperature changes

  • Avoid smoking

    • Smoking narrows blood vessels and worsens Raynaud’s phenomenon
    • Local smoking cessation programs are available through Kent County Health Department and area health systems

  • Gentle, regular exercise

    • Helps maintain joint mobility and muscle strength
    • Walking, stretching, yoga, and low-impact activities can be helpful
    • Ask your healthcare provider or physical therapist for a safe exercise plan

  • Stress management

    • Stress can trigger Raynaud’s attacks and worsen symptoms
    • Techniques such as deep breathing, meditation, counseling, or support groups may help

Aids, Equipment, and Home Modifications

Scleroderma can make certain daily tasks more difficult, especially if the hands are affected. An occupational therapist in Grand Rapids can:

  • Suggest tools and devices to make daily activities easier, such as:

    • Large-grip utensils and pens
    • Adaptive clothing fasteners
    • Lever-style door handles instead of knobs

  • Recommend home or work modifications, such as:

    • Easier-to-turn faucets and handles
    • Adjusted workstations to reduce strain
    • Strategies to conserve energy and protect joints

Changing your home or work environment and using aids and equipment can significantly improve comfort and independence.

Local Scleroderma Resources in Grand Rapids, MI

If you live in Grand Rapids or the surrounding West Michigan area and are dealing with scleroderma symptoms, consider reaching out to:

  • Your primary care provider (GP/family doctor) – first step for evaluation and referral

  • Rheumatology and dermatology clinics at:

    • Corewell Health (Spectrum Health)
    • Trinity Health Grand Rapids
    • Metro Health – University of Michigan Health
    • Mercy Health

  • Kent County Health Department & Grand Rapids Public Health resources

    • For general chronic disease management programs, smoking cessation, and wellness resources

  • National and regional scleroderma organizations

    • For education, support groups (including virtual), and advocacy

Key Points About Scleroderma in Grand Rapids

  • Scleroderma is a connective tissue disease that often causes thickening and hardening of the skin, especially on the hands and face.
  • Many different areas of the body can be affected, and symptoms vary greatly from person to person.
  • Raynaud’s phenomenon is common and can be worsened by cold West Michigan winters, making cold protection especially important.
  • There is no cure, but with early diagnosis, specialized care, medications, and lifestyle changes, it is often possible to successfully manage symptoms and protect organ function.
  • Localized and systemic forms of scleroderma have distinctive signs and symptoms, and treatment plans are tailored accordingly.
  • Ongoing care with Grand Rapids rheumatologists, dermatologists, and other specialists is essential for monitoring and managing this complex condition.

If you notice persistent skin changes, severe Raynaud’s symptoms, or unexplained joint, lung, or digestive issues, schedule an appointment with a Grand Rapids healthcare provider for evaluation and possible referral to a scleroderma specialist.