Imagine that you suddenly find it difficult to get up from a chair, or when you raise your hand to comb your hair, it feels like your hand is numb. At the same time, small purple spots appear around your eyes, on your neck, and on your chest. Has this happened to you? You may think that this is just normal fatigue. But sometimes it can be a symptom of a more serious, rare condition called Dermatomyositis . Don't worry, we'll talk about everything in simple terms.
What is Dermatomyositis?
Simply put, Dermatomyositis is a rare condition that weakens the muscles in our body and causes skin rashes. It is one of a group of diseases (myopathy) that affect the muscles. This disease can sometimes cause serious conditions such as difficulty breathing and swallowing.
These symptoms may develop gradually over months for some people. But for others, they may come on suddenly. So if you have any of these symptoms, it is important to see your doctor as soon as possible. The sooner we start treatment, the better the chances of avoiding serious complications.
Very rarely, especially within the first year after symptoms begin, the disease can be fatal. It also increases the risk of developing certain types of cancer.
What is the difference between Dermatomyositis and Lupus?
You may have heard of a disease called lupus. Dermatomyositis is similar to lupus and other autoimmune diseases. However, there are some clear differences between the two. Since the exact cause of dermatomyositis is not yet known, it is not classified as an autoimmune disease.
Let's look at this table to further clarify the difference.
| Characteristic | Lupus | Dermatomyositis |
|---|---|---|
| Main symptoms | Joint pain, skin sensitivity and rashes, effects on internal organs (brain, lungs, kidneys). Symptoms come and go. | Muscle weakness and specific skin rashes. Muscle damage. |
| Diagnosis | Based on specific blood tests and symptoms. | Blood tests, skin and muscle biopsies, and scans. |
It is essential to diagnose and treat both of these conditions as soon as possible. If you develop any new symptoms, see a doctor immediately.
Who is most likely to get this disease?
Anyone can develop dermatomyositis, but some groups are at higher risk.
- For children between 5 and 15 years old.
- For adults between 40 and 60 years old.
- Women are more likely to see this disease than men.
But remember, this is a very rare disease . On average, only about one in a hundred thousand people develops this disease each year.
How does this disease affect the body and the risk of cancer?
Dermatomyositis is a condition that can affect you for the rest of your life. If the damage to your muscles is severe, you may not be able to use part of your body properly, which can lead to some kind of disability. This usually happens over a period of years, but for some people, this muscle weakness happens more quickly.
In addition , the biggest risk is the risk of cancer.
Studies show that about 15% of people with dermatomyositis have a risk of developing some type of cancer later in life.
The most common types of cancer seen with this disease are:
- Ovarian cancer
- Lung cancer
- Lymphoma
- Breast cancer
- Colon cancer
Therefore, if you are diagnosed with this disease, it is very important to talk openly with your doctor about your cancer risk and the screenings that should be done for it.
What are the symptoms of dermatomyositis?
The two main symptoms of this disease are muscle weakness and a skin rash . For some people, both symptoms appear at the same time. For others, one symptom appears weeks, months, or even years later, and the other symptom appears.
Let's look at these features in a little more detail.
| Characteristic type | Description and examples |
|---|---|
| Muscle weakness | This weakness can make it difficult to perform daily tasks. For example:
|
| Skin rash | These lesions appear especially in areas exposed to the sun. They are purplish-pink in color and may be slightly swollen. The most common areas are:
|
| Other features |
|
Some children develop the disease and the symptoms disappear completely as they grow older. However, in 80% of patients, it is a lifelong (chronic) condition. This means that symptoms recur from time to time.
What causes this?
In fact, experts still don't know the exact cause of dermatomyositis, but there are several factors that are thought to contribute to it.
- Genetic factors: Some studies suggest that this may be a genetic condition that is passed down from generation to generation.
- Autoimmune issues: As we discussed earlier, this is similar to autoimmune diseases. This means that the immune system, which protects our body, may mistakenly attack our own healthy muscle and skin cells.
- Viral infections: Some evidence suggests that a viral infection, once it has resolved, can trigger Dermatomyositis.
- Environmental factors: Some studies have found that living in areas with poor air quality can also contribute to the development of this disease.
How to diagnose the disease?
After your doctor listens to your symptoms, he or she will order several tests to confirm the diagnosis.
| Test method | What do you see in that? |
|---|---|
| Blood tests | They look for increased levels of enzymes that accumulate in the blood when muscles are damaged, as well as for autoantibodies that indicate the activity of the immune system. |
| Biopsy | A very small piece of tissue is taken from a skin lesion and from a muscle and examined under a microscope. This can confirm whether there is inflammation within the muscle. |
| Imaging tests | An MRI (Magnetic Resonance Imaging) scan or chest X-ray may be done to check the condition of the muscles, nerves, lungs, and other organs. |
| EMG test | Electromyography (EMG) is a test that measures the electrical activity of muscles and nerves. This can help determine whether muscle weakness is caused by the disease itself or by another cause. |
What are the treatments for dermatomyositis?
Although dermatomyositis cannot be cured, there are many effective treatments that can help control symptoms, reduce muscle damage, and help you live a normal life. Your doctor will choose the most appropriate treatment based on the nature and severity of your symptoms.
- Corticosteroids: These medications reduce inflammation in the muscles.
- Physical therapy: If muscles are damaged, exercise and physical therapy are very important to strengthen them again. The stronger the muscles are, the more resistant they are to damage from the disease.
- Immunosuppressant medicines: These medicines stop the immune system from attacking healthy cells.
- Intravenous immunoglobulin (IVIg): This is a treatment in which immunoglobulin, a component of our own blood, is administered externally to the body, like saline. This helps control the immune system's malfunctioning.
- Speech therapy: If the muscles in the throat are weak and making it difficult to swallow, speech therapy can help strengthen those muscles.
How to manage symptoms?
Living with this disease is a long-term journey, so managing symptoms is very important.
- Don't skip exercise: Do the exercises your doctor or physical therapist gives you exactly as they tell you. This will help keep your muscles strong.
- Use medication correctly: Take the medication prescribed by your doctor exactly for the duration prescribed.
- Protect yourself from the sun: This is very important. The ultraviolet rays in the sun can increase skin damage. Therefore, limit your time in the sun. If you do go out, use a good sunscreen with at least SPF 50+ . Reapply every two hours.
- See your doctor regularly: You should see your doctor regularly to monitor your symptoms and see if your condition is changing.
More things to know about this disease
It's normal to feel scared when you're diagnosed with dermatomyositis. It can be a shock to learn that it's a lifelong, potentially fatal disease. But remember, the sooner you get diagnosed and start treatment, the better your chances of living well.
Although there is no cure for this disease, 80% of people remain chronically ill with symptoms. However, with treatment, about 20% of people can achieve long-term remission without symptoms.
The risk of death is as low as 5%. However, some factors can increase this risk:
- Delay in starting treatment by more than 6 months.
- Being over 60 years of age.
- Having severe symptoms.
- Disease affecting the throat, lungs, or heart.
- Having cancer or developing a new one.
When should I see a doctor?
If you experience new muscle weakness, especially if it's accompanied by skin rash, see your doctor without delay. As we've said before, the sooner you diagnose the condition, the sooner you can start treatment and avoid serious complications.
Don't forget to ask these questions when you see your doctor:
- Do I have Dermatomyositis or another disease?
- What tests do I need to do?
- What treatments do I need and how long will I need them for?
- Do I need to get screened for cancer?
Make a plan with your doctor about your treatment journey. This will give you a better understanding of what to expect next and what to do if your symptoms worsen.
Take-Home Message
- Dermatomyositis is a rare condition that causes muscle weakness and specific skin lesions.
- It is very important to see a doctor as soon as possible if you notice symptoms. Prompt treatment can prevent serious complications.
- Since this is usually a lifelong disease, long-term management is required.
- It is essential to take medications as directed by your doctor, do physical therapy exercises, and especially protect yourself from the sun.
- This disease can increase your risk of cancer, so talk to your doctor about it and any necessary tests.
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