Do your joints bend too much? Does your skin stretch? Let's talk about Ehlers-Danlos Syndrome (EDS)!

Have you ever felt like your joints are more flexible than others? Maybe you can bend your fingers back in an unusual way, or your skin feels more stretched than normal. While these may seem like normal things, sometimes they could be caused by a genetic condition called Ehlers-Danlos Syndrome (EDS). Don't worry, this is something that many people haven't heard of, so today we'll talk about it in a simple way that you can understand.

Simply put, what is Ehlers-Danlos Syndrome (EDS)?

Think of our body as a building made of bricks. These bricks (that is, our body organs, bones, and skin) are held together by mortar. Similarly, the 'mortar' that holds the parts of our body together and keeps them strong is called connective tissues . These are found everywhere in our bones, cartilage, skin, and blood vessels.

Ehlers-Danlos Syndrome (EDS) is a genetic disorder that causes the connective tissue to weaken. The main cause is the lack of collagen, a protein that is essential for the strength of connective tissue. It's like a mortar mix lacking cement. This causes loose joints, skin that is too stretchy, bruises easily, and sometimes even blood vessels and internal organs to weaken.

This is a genetic disease that runs in families. However, there is no specific cure for it yet. But the best thing is to be able to control and manage the symptoms and live a normal life.

What are the main types of EDS?

EDS is named after the two doctors who first described it. There are currently 13 main types of it. Although each type is slightly different, they all share a common cause: weakening of the joints and skin structures. Let's take a look at the most common types.

What are the common symptoms of EDS?

Symptoms may vary depending on the type of EDS you have, but these are the common symptoms that most people experience.

• Overly flexible joints: For example, you may be able to curl your thumb and rub it against the back of your hand, or bend your knees back. Some people call this 'double-jointed'.
• Stretchy skin: Your skin can be pulled away from your body, and when you let go, it will snap back into place. It can also be very smooth, like velvet.
• Fragile skin: The skin turns blue and bruises even after a small blow. If you get injured, it takes longer to heal. Scars form easily.

This is also common:

• Dental problems (tooth extraction, bleeding gums)
• Joint pain
• Feeling extremely tired even after sleeping well
• Difficulty concentrating
• Headache
• Flat feet
• Muscle weakness, especially in cold weather
• Difficulty controlling urine
• Dizziness
• Digestive system problems, such as bloating

If children have EDS, they may have delayed motor skills such as walking and sitting, and may not reach their full height for their age.

How to diagnose the disease?

When you report symptoms like these, your doctor will first examine you carefully.

• They'll see how far you can bend your knees, elbows, and toes.
• They will check to see how much your skin is stretched and if there are any scars or bruises.
• Ask if anyone in your family has these symptoms.

Most of the time, types like hEDS can be identified with this physical exam alone. However, sometimes further testing is needed to confirm the diagnosis and determine the exact type.

• Genetic testing: A blood sample can be taken to see if there are gene mutations that cause EDS.
• Echocardiogram: A sound wave test to check for problems with the heart and blood vessels.
• CT scan or MRI scan: These scans help to see the condition of the spine or internal organs.
• Skin biopsy: A small piece of skin is taken and examined under a microscope to check for abnormalities in collagen.

Treatment and management

Once you've identified which type of EDS you have, you can talk to your doctor about how to manage your symptoms. You may also need to see different specialists.

• Orthopedist
• Dermatologist
• Rheumatologist

Here are some of the main treatment methods:

• Physical therapy: This is very important to strengthen muscles and prevent joint stiffness. Low-impact exercises like walking and swimming are good.
• Occupational therapy: You can learn about techniques and devices to make daily tasks easier. You will receive advice on how to reduce stress on your joints.
• Assistive devices: You may need braces to prevent joint movement or a wheelchair to help you get around.
• Painkillers: For joint pain, you can take ordinary painkillers or, if necessary, stronger medications prescribed by a doctor.
• Surgery: Surgery is used to repair joints that are frequently affected and cannot be controlled with other treatments. However, because people with EDS often have delayed wound healing, this is considered a last resort.

Things to consider when living with EDS

Living with EDS means you have to take a little extra care of your body. These things can help you avoid accidents.

• Avoid strenuous sports: Avoid contact sports and exercises that put a lot of pressure on the joints, such as running.
• Don't lift weights: Lifting weights increases the risk of spraining joints and injury.
• Protect your skin: Use mild soaps. Apply sunscreen daily. Wear protective pads on areas like knees and elbows.
• Take care of your teeth: Use a toothbrush with soft bristles.
• Mental health: Living with a long-term condition like this can be emotionally draining. Talking to a counselor or joining a support group with like-minded people can be a great help.

If you are thinking about starting a family, you can talk to a genetic counselor to understand the risk of passing this disease on to your children.

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