BY MELANIE MANNARINO

Her doctor initially suspected Lyme disease based on Glass ’ symptoms and the fact that she lives in the Northeast ( where the illness is prevalent ). Armed with a diagnosis and a prescription , Glass hoped the muscle spasms would abate .

But by Sunday night , Glass couldn ’ t get out of bed . In addition to a heavy feeling in her legs , the now 62-year-old recalls , she had a rash on her face . “ My skin was itching and on fire , and I looked like a snake shedding its skin .” The next morning , Glass couldn ’ t move her legs , and the rash on her face had spread to her hips , scalp and back of the neck . Her husband had to carry her to the local emergency room .

When she arrived , doctors quarant ined Glass , thinking she had an infectious disease . After blood tests ruled out the initial Lyme disease diagnosis and doctors suspected mononucleosis , her case was sent to the rheumatology team . Two rheumatologists looked at Glass ’ rash , assessed her symptoms and did thorough testing , which confirmed their suspicions : She had a disease called dermatomyositis .

Dermatomyositis ( DM ) is a rare autoimmune disease , part of a group

Glass was diagnosed with myositis in 2016 .

Close-up shot of creatine Kinase enzyme , found in brain , skeletal , and heart muscles .

of conditions called Idiopathic Inflammatory Myopathies ( IIM ). ( The word “ myositis ” means “ muscle inflammation .”)

With IIMs , the body typically produces antibodies that attack the muscles and other connective tissue , including skin , causing inflammation and damage . The first sign of IIM is typically weak muscles ; a patient might have difficulty standing , walking or picking things up , explains Terence Rooney , VP Disease Area Stronghold Leader , Rheumatology , Johnson & Johnson Innovative Medicine . In some extreme cases , muscles may weaken to the point of paralysis .

This chronic condition commonly affects the arm and leg muscles , but other parts of the body may be affected as well — like the muscles used to talk and even breathe . “ It ’ s a multi-system connective tissue disease ,” Rooney says .

There ’ s currently no way to prevent myositis , nor is there a way to predict it . There is also no cure for IIM , but there are treatments to help with symptoms .

Patients like Glass are why scientists at Johnson & Johnson are committed to gaining knowledge about this rare disease , as well as developing potential medications that may help treat it . For Myositis Awareness Month , here are five things to know about IIM , plus insights into Glass ’ journey navigating the disease .

1 . THERE ARE SEVERAL DIFFERENT TYPES OF IIM

The three most common subgroups of IIM include DM , Immune-mediated

necrotising myopathy ( IMNM ) and Anti-synthetase syndrome ( ASyS ). These subgroups were established in 2017 by the European League Against Rheumatism and the American College of Rheumatology when it published new classification criteria for IIM that aims to distinguish it from other conditions .

DM can affect all ages and genders , but it is more common among women . Patients may experience muscle weakness , along with a rash on the eyelids , cheeks , nose , back , upper chest , elbows , knees and / or knuckles . IMNM involves muscle weakness with evidence of muscle cell death ( necrosis ). With ASyS , clinical symptoms include myositis , fever , Raynaud ’ s phenomenon , nonerosive arthritis , mechanic ’ s hands and Interstitial lung disease ( ILD ).

IIM tends to strike children younger than 15 , as well as people between the ages of 45 and 54 , with slightly more women getting diagnosed than men . In people under age 50 , DM is more common .

2 . SOME PATIENTS WITH IIM MAY GO UNDIAGNOSED FOR YEARS

Diagnosing IIM is challenging because it is a highly variable disease . Patients can often be misdiagnosed or treated for other diseases before a proper diagnosis is made .

An estimated two to eight people two to eight people per million , are diagnosed with IIM annually , sometimes after years of suffering without knowing the cause . “ There is no straightforward , quick diagnosis for this disease , especially because there are sometimes multiple organs involved ,” says Cathye Shu , M . D ., Ph . D ., Director of Immunology Clinical Development , Johnson & Johnson Innovative Medicine . “ IIM can affect the skin , joints , lung , cardiac and gastrointestinal systems . In some cases , diagnosis can take up to 10 years .”

Diagnosis can require a multipronged approach , often including a thorough exam and muscle strength and coordination tests . Patients may undergo blood tests to check for elevated levels of muscle enzymes such as creatine kinase ( an intracellular enzyme found in the brain and in skeletal and heart muscles ), which can indicate muscle deterioration . Doctors may also take a muscle biopsy to test the tissue for inflammation and rule out other