Antisynthetase Syndrome Lifestyle Options | Johns Hopkins Myositis Center


(Piano music) – So maintaining an active
lifestyle is very important when patients have
antisynthetase syndrome. Often times, the patient will be
referred to physical therapy or occupational therapy to work on strengthening their muscles. Sometimes if the lungs are involved, the patient might be
referred to what’s called pulmonary rehabilitation. Which is basically physical
therapy for the lungs. Kind of think of it as
push ups for the lungs. And it basically helps patients
maintain as much function and activity as possible. It used to be that we actually did not recommend patients to be very active when they had these types of conditions. The thought being look
their muscles are injured, their lungs are damaged,
their joints are swollen, you know we don’t want to flare them up, by them having a lot of activity. However a lot of research
has been coming out recently, which actually suggest
that physical activity, exercise, et cetera, can be
quite beneficial for patients. (piano music) – So we get a lot of questions about, are there certain diets
patients should eat. Unfortunately, there’s not
a lot of robust evidence, to recommend one specific diet. So currently we recommend what most people probably already know which is to just eat a well balanced diet. Something low in processed
food, low in fat content, we do now that fat can be
related to inflammation. So try and avoid preserved foods would probably be in their favor. In terms of habits, if a
patient is an active smoker, we certainly would recommend
cessation of smoking. Smoking can definitely make
the lung disease worse, it can definitely make
the joint disease worse, as well as the muscle disease. So the smoking cessation is certainly something that
should be considered for all patients that’s relevant to. In addition, we recommend for
patients who have a lot of skin disease, we recommend that they should avoid a lot of light. So when they go out into the sunlight, they should make sure they
wear sun protective clothing, the should wear hats, they
should wear high spf sunblock. Because UV light, ultra
violet light, from the sun, can sometimes flare up diseases. Again that’s only for patients who have a lot of skin disease, but something that they
should be aware of. (piano music) – Lastly, from a coping standpoint, a lot of patients, you know, are in search of other people
who have these conditions, good information, because
these are rare conditions, there’s not that much information
out there that’s reliable, that’s validated, that’s vetted
by healthcare professionals. So a lot of organizations exist that can give patents resources including, the myositis association. Otherwise known as TMA. They have a website and they
have a lot of information, not only on antisynthetase
syndrome but a host of myositis. (piano music) So, maintaining physical activity is very important in patents who have antisynthetase syndrome. And to be honest its very important for any patient who has myositis. So that may be related to
keeping the muscles active with exercise and physical therapy, it may mean keeping the lungs active in terms of participating
in pulmonary rehabilitation. So these are all programs
dedicated to making sure you don’t lose function of
these various organ systems. It’s important when patients
are doing these things, working with physical
therapy, pulmonary rehab, et cetera, that in the back
of their mind they think, okay well what can take
home and do by myself. Because eventually
these services will end. On average they are three
months three times a week. And we can renew them
as healthcare providers, but sometimes depending on
the patients, their means, their insurance company, their
transportation abilities, they just can’t do it all year round. So it’s helpful for patients to kind of make a little catalog in
the back of their mind, saying okay well after this is done, I’m gonna learn these exercises and I’m going to be able to
do them by myself in my home.

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