September-October | The HEALTH |
People 27 |
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conditions , such as muscular dystrophy .
3 . IIM MAY CAUSE ORGAN DAMAGE
For IIM patients , there is a very real risk of organ damage , including to the lungs , explains Rooney . “ When disease impacts the muscles that help us breathe , it can be life-threatening .” It ’ s estimated that five per cent of people with dermatomyositis die from complications of the disease within a year of diagnosis .
Even after receiving treatment , Glass ’ health deteriorated . At first , steroids helped reduce her pain and symptoms , but six weeks after diagnosis , she lost her voice and her ability to eat . “ I couldn ’ t speak , walk or sit . My trach tube wasn ’ t staying in ,” she recalls . “ My body was shutting down , and my family was coming to say goodbye .”
But according to Dr Shu , relapses like Glass ’ aren ’ t uncommon . “ If patients don ’ t have early treatment , muscle inflammation can lead to permanent damage and loss of mass that necessitates
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assistive devices such as canes or wheelchairs ,” she says . The sooner the IIM can be controlled , the lower the chances of complications .
4 . A COMBINATION OF MEDICINE AND EXERCISE CAN HELP PATIENTS STAY IN REMISSION
Historically , the most effective treatments for IIM have been high doses of immunosuppressants and corticosteroids to treat the inflammation , Rooney explains . But that ’ s not practical for long-term disease management , he explains , because corticosteroids have well-known severe side effects — including infection , osteoporosis and metabolic disturbance — when used for extended periods of time . There ’ s a desperate need for a more targeted approach .
“ What we really need is a safe and well-tolerated medication that will shut down the attack — one that doesn ’ t just treat symptoms , but that treats the root cause of disease ,” says Rooney .
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“ If patients don ’ t have early treatment , muscle inflammation can lead to permanent damage and loss of mass that necessitates assistive devices such as canes or wheelchairs .”
– Cathye Shu
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Currently , Johnson & Johnson is developing a therapy that targets the specific antibodies that attack the muscles . “ This targeted therapy is designed based on an understanding of how IIM develops ,” Rooney adds , so the therapy can deliver a surgical strike at the part of the immune system triggering this response . The goal : to reduce the levels of pathogenic antibodies — also known as autoantibodies — associated with this disease .
“ If we do that , we believe symptoms will improve ,” says Dr Shu , who is leading clinical trials . “ Then patients could follow a chronic maintenance treatment , which may prevent relapse or disease flare-ups .”
Treating the inflammation is one part of the equation — it ’ s also important to exercise the muscles to keep them as strong and flexible as possible . Patients may also benefit from other sources of support .
Once Glass was released from the hospital , she began to receive physical therapy and speech therapy at her home , and she saw a neuropsychologist and social worker regularly . She credits the combination of a physical and mental approach with helping her heal . “ It ’ s helped me in my journey , to find myself and define my mission .”
5 . IIM IS A RARE CONDITION AND DOCTORS ARE TRYING TO LEARN MORE ABOUT IT
Eight years after her first myositis flareup , Glass is managing her symptoms and feels lucky for what her body can do .
The medical community has made strides in IIM research in recent years . But there are still questions to be answered . “ We have yet to understand what kicks these diseases off in the first place ,” says Rooney . With greater understanding could come even more customised care . “ Having a better understanding of an individual patient ’ s unique ‘ flavour ’ of this disease-specific symptoms , for example — could help us further personalise therapy .”
Eight years after her first DM flareup , Glass is managing her symptoms and feels lucky for the things her body can do . “ I can ’ t run like I used to , but I ’ m walking , I ’ m talking , and I ’ ve learned how to manage my illness ,” she says . “ I was the most severe case my medical team had ever seen , and they are shocked that I am still alive .”
Glass is now an advocate for IIM ; she runs resource and support groups around the world to help people with chronic disorders manage their illnesses . “ Everyone who has a rare disease thinks we are misunderstood or ignored because we are ‘ rare .’
Who would notice us ? But when you put all the ‘ rare ’ people together , you see there are many of us . And there ’ s power in numbers .” – The HEALTH
This article appeared on the website of Johnson & Johnson recently
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