Let's learn about this strangely named condition called POEMS Syndrome.

When you hear this name, you probably think of Poems, right? But this is not a story about poetry. POEMS syndrome is a very rare blood disorder that can affect our body's nerves, various organs, hormonal system, and skin at the same time. It is a bit complicated to diagnose, because the symptoms related to it can be similar to the symptoms of many other diseases. That is why it is very important to be aware of this.

Why is this called POEMS?

It gets its name from the first letters of five of the main symptoms and signs of the disease. Let's see what they are.

There are times when it takes months of testing to diagnose this condition, because these symptoms can be easily confused with many other diseases when taken separately.

What are the symptoms of POEMS syndrome?

Let's now look in detail at the symptoms of each part of the POEMS discussed above.

• P - Nerve damage (Polyneuropathy): This is the first thing that many people notice. The toes and soles of the feet may feel numb, prickly, and may feel burning or sharp pain . Over time, this condition can spread to the hands. The strength in the hands decreases, and you may not be able to hold anything in your hand. In severe cases, it may be difficult to stand up, walk, and even breathe.

• O - Organomegaly: Your liver, spleen, or lymph nodes may become swollen. This can cause symptoms such as a feeling of fullness, abdominal pain or bloating, and extreme fatigue .

• E - Hormonal changes (Endocrinopathy): Hormonal changes can cause things like decreased sexual desire, milky discharge from the breasts (for both women and men), and swelling of the hands and feet .

• M - Abnormal M-protein: This protein can build up in the blood and cause bones to weaken or become damaged , which can cause bone pain.

• S - Skin changes: The skin may become darker than normal. Sometimes the skin may thicken, and red spots may appear on the chest. There may also be increased hair growth on the face and legs, and the nails may turn white .

Why does something like this happen?

The exact cause of this is not yet known, but doctors and researchers believe it is related to the abnormal functioning of a type of cell in our body called plasma cells .

Simply put, these abnormal plasma cells release the M-protein we talked about into the blood. These abnormal cells and the M-protein combine to damage various parts of the body. In addition, these patients also have high levels of a protein called Vascular Endothelial Growth Factor (VEGF) in their blood. This VEGF protein causes fluid to leak from blood vessels into surrounding tissues. This extra fluid causes swelling, organ enlargement, and nerve damage.

Could this situation be serious?

Yes, POEMS syndrome can sometimes become severe quickly, leading to life-threatening complications.

Some of them are:

• Capillary Leak Syndrome: Organ failure can occur due to excessive fluid leakage from blood vessels.
• Restrictive Lung Disease: Difficulty breathing due to the lungs not being able to expand properly.
• Pulmonary Hypertension: Excessive pressure in the blood vessels that carry blood to the lungs.

How does a doctor find this?

When you go to see a doctor, he will listen carefully to your symptoms. He will then examine your body and recommend several tests to confirm the diagnosis.

In addition, breathing tests, echocardiograms, and hormone tests may be performed depending on your symptoms.

What are the treatments for this?

The main goal of treatment is to control symptoms and the abnormal plasma cells. There are various treatments for this.

• Chemotherapy: This treatment destroys abnormal plasma cells or stops their growth.
• Immunotherapy: These drugs help use your own immune system to destroy abnormal plasma cells.
• Radiation therapy: Radiation therapy destroys abnormal plasma cells.
• Autologous stem cell transplant: This involves removing abnormal plasma cells from your body and replacing them with healthy stem cells.
• Physical therapy: Nerve damage can make it difficult to walk and perform daily activities. Physical therapy exercises can help you regain strength.
• Psychological support: Living with a rare, incurable disease like this can be very difficult mentally. This can lead to conditions like anxiety and depression. Seeking the help of a counselor can help manage this stress.

How long can you live with this disease?

This is a problem that many people have. If the disease is diagnosed early and treated properly, many people can live 10 years or more after being diagnosed. New drugs are now available to treat this disease. However, this can vary from person to person. The best person to get the best explanation and understanding of your condition is your doctor. So talk to him/her openly about it.