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Why Scleroderma Can Be Difficult to Diagnose Correctly

June is National Scleroderma Awareness Month, so if you have a loved one in San Mateo and elsewhere who suffers from this condition and is in hospice care, this week’s article may be of interest to you. Because scleroderma takes so many forms and affects many areas of the body, it’s a difficult diagnosis to make. Blood tests can detect high levels of certain antibodies the immune systems produce, and small skin samples can be sent to the lab for examination, says the Mayo Clinic.

Scleroderma is a chronic connective tissue disease classified as an autoimmune rheumatic disease. It’s derived from the Greek word “sclero,” which means hard, and the Latin word “derma,” which means skin, points out the Scleroderma Foundation. The most visible sign of this disease is a hardening of the skin. It’s not a contagious, infectious, malignant, or cancerous disease. But as with any chronic disease, it can be serious, with cases ranging from mild to life-threatening. How serious it is for any given person will depend on which part of the body is most affected. A mild case can get much worse if it’s not treated early and correctly.

Early Diagnosis is Key

Being diagnosed quickly and properly by a doctor is key in minimizing symptoms and reducing the chance of irreversible damage. In addition to the patient’s primary care physician, other doctors who may be in on the care plan include rheumatologists and dermatologists. Physical and occupational therapists can also be a part of the team, helping patients to manage pain, improve strength and mobility, and maintain independence with daily tasks.
About 300,000 Americans suffer from scleroderma, but because scleroderma has symptoms similar to many other autoimmune diseases, diagnosis isn’t as easy as it could be. Unfortunately, this leads to several misdiagnosed or undiagnosed cases.

While skin problems marked by scleroderma will fade away within five years, if you suffer from the type of scleroderma that damages internal organs, this will typically get worse over time. No one knows the exact cause of scleroderma, but experts believe it is due to the overproduction of collagen. It does not appear to be genetic. Some symptoms include:

  • Swelling of the hands and feet
  • Red spots on the skin
  • Excessive calcium deposits on the skin
  • Rigidity
  • Mask-like facial skin
  • Ulcerations of the toes and fingertips
  • Pain and stiffness in joints


While there is no cure at the moment, many treatments exist to relieve symptoms. Some people don’t need any treatment or medications, while others need some help in this regard. Some of the medications that can control symptoms and prevent complications can include:

  • Steroid creams or pills may reduce swelling and joint pain, slow down new skin changes, and loosen stiff skin.
  • Blood pressure medications can dilate blood vessels to keep lung and kidney problems at bay.
  • Immune suppressant drugs can reduce overall symptoms.
  • Antibiotics and medications can reduce stomach acid, relieve heartburn, and reduce bloating, constipation and diarrhea.
  • Antibiotic ointment and avoiding cold can prevent infection of fingertip ulcers.
  • Over-the-counter pain relievers and prescription pain meds can control discomfort.

Why Diagnosis is so Tough

Proper diagnosis of scleroderma can be a long and difficult road, as it’s such a rare disease — one which few doctors or patients are knowledgeable about. The biggest reason for misdiagnosis is that it resembles other connective tissue diseases like Lupus and Rheumatoid Arthritis, especially in the beginning stages. Also, the initial symptoms can be unclear and vague, such as cold hands, fatigue, general achiness, and slight difficulty swallowing. Sometimes, doctors wrongly assume the patient’s symptoms are psychosomatic.

Other times, doctors may strongly suspect the patient has scleroderma but are reluctant to diagnose them with it, as the patient doesn’t quite meet the diagnostic criteria, which is quite stringent. Patients who are most rapidly diagnosed are those with scleroderma antibodies in their blood.

In addition to blood tests, other tests can be done to try and make a diagnosis, such as x-rays, CAT scans, and tests that measure how well the lungs are functioning.

In general, treatment has the highest chance of success when started right after diagnosis. Regular physical and occupational therapy can help patients straighten, strengthen and bend the joints to maintain a high quality of life. These therapies can also minimize tightening of the skin over the joints. Symptoms can be diminished through early treatments such as light therapy and medications such as methotrexate and cyclosporine.

Dermatologists can treat issues such as hardened skin and visible blood vessels. Those patients with hard, thickening skin on a joint can begin treatment early to help them open and close their mouths or bend and straighten their fingers.

Early diagnosis is necessary for giving the patient and family answers so that they may proceed with treatment quickly.

Contact Pathways Home Health and Hospice

We care for patients with scleroderma in our hospice program and can enlighten you further on the care team we can assemble to best meet the needs of you or your loved one. Contact us at 888-978-1306.