Living with Ehlers-Danlos Syndrome: How to Make Life Easy and Comfortable

Janet had always been prone to accidents. She would suddenly lose balance while walking perfectly only a few seconds ago and would slam down on the ground so hard that her elbows and knees would get skinned. Her body was always covered with bruises. She would often drop dishes which was just considered as a sign of her clumsiness.

But it was much more than clumsiness. Her joints were delicate and sprained almost every day. Lifting weights was not even an option for her since it would leave her stuck in her bed with inflamed wrists and aching ankles for weeks.

What was wrong with her? Was it a weakness of some sort? A nutritional deficiency perhaps? Or maybe it really was just clumsiness?

Frustrated, Janet finally consulted a geneticist who revealed to her that all her problems were, in fact, due to a rare connective tissue disease, known to us as Ehlers-Danlos Syndrome.

What is Ehler-Danlos syndrome? How does it affect your body and how can you manage to continue living your life normally? This in-depth article will help you find out.

What is Ehlers-Danlos Syndrome?

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a genetic disorder that affects the connective tissue; the glue comprising of complex proteins and other substances, that keeps your entire body together and prevents it from falling apart. In the absence of this glue, the underlying structures in your body lose elasticity and strength, causing a variety of symptoms; the most prominent of which are loose, flexible joints that are prone to easy bruising and dislocation. (1,2)

Other complications that may co-occur with Ehlers-Danlos syndrome are mentioned below:

  • Limited mobility
  • Arthritis
  • Breathing problems
  • Dental problems (3)
  • Frequent joint dislocations leading to pain
  • Visual problems (4)

Treating Ehlers-Danlos Syndrome

Treating Ehlers-Danlos Syndrome

Unfortunately, there is no permanent treatment for this condition, and the best possible course to adopt is to modify your life to minimize symptoms and maximize the quality of life. For this purpose, you may need to work with a panel of various experts together with applying simple hacks in your daily life.

Multiple therapies can help you out on your journey to overcome the symptoms of Ehlers-Danlos syndrome. Some of these therapies are mentioned below:

  1. Physiotherapy can help you learn exercises that you can safely perform to strengthen your joints, minimize injury, and reduce pain.
  2. Enrolling in occupational therapy will guide you about managing your daily activities. It will also let you know about how you can use different equipment to benefit your daily life. (5)
  3. Cognitive-behavioral therapy or counseling sessions can help you understand your disease and cope with all the changes. (6)
  4. Genetic counseling is helpful for those who are interested in starting a family. These sessions will help you understand the condition, its pattern of inheritance, and the risk of your future generations inheriting it. (7)

Living Safely with Ehlers-Danlos Syndrome: Everyday Tips and Tricks

Living Safely with Ehlers-Danlos Syndrome: Everyday Tips and Tricks

Living with Ehler-Danlos syndrome can be difficult for most people, mainly because it is a lifelong disease requiring constant monitoring. The main aim is to stay active but within the safety limit, since even the slightest sudden movement can make your joints come apart. To make sure you continue living a normal life without crossing the safety limits, mentioned below are some tips to follow while performing different everyday activities.

Car Safety

Getting in and out of the car can shift your sacrum out of place, so the best thing to do to avoid that scenario is to get a car seat. A car seat will prevent you from dipping down or lifting your body, and you can simply slide into the car seat while maintaining your joint health.

To make your experience more secure, follow the three steps:

  • Sit down on your seat with your legs still touching the ground
  • Turn your face towards the car's front
  • Swing your legs to get them inside the car

Make sure that your legs are at a ninety-degree angle and your knees are below your hips once you sit down in the car.

Reaching Out for Things

If you are sitting in your chair watching television and suddenly, the remote slips away from your hand, do not lean over to one side and reach out for it. Doing so is going to cause an up-slip which will jam your femur into your hip.

The condition may not cause pain at first but can make you very uncomfortable the following day. If you are doubtful that you might have encountered an up slip, there is a way to check it out.

Lie down on a bed, arch your body followed by putting your legs down gently. Call someone to check if your ankle bones are meeting. In case you have suffered an up slip, your leg lengths will vary considerably.

Opening Soda Cans & Washing Dishes

Using a can opener to open a can sounds pretty safe, right? What can possibly go wrong? For people with Ehlers-Danlos syndrome, there is a lot that can go wrong, even with opening a simple can. While attempting to open a can, you often exert downward pressure which may cause subluxation of your fingers, hand, shoulders, and elbow.

To avoid this, consider getting a handy can opener which you just put on the top of a can and press the button instead of applying pressure. Similarly, when you are doing dishes in the kitchen, try using a brush in place of a sponge. Using a sponge to scrub the dishes can hyperextend your fingers and brushes can be a great alternative in such cases.

Sleeping with POTS

Most people with Ehlers-Danlos syndrome suffer from a condition called Postural Orthostatic Tachycardia Syndrome or POTS. It is a disease that may cause abnormalities in the heart rate, fainting, light-headedness, and unstable blood pressure. Sometimes, death may also occur.

So if you are suffering from POTS, you need to be extra careful, especially in your sleep. For starters, you must adopt a 30-degree angle while sleeping by lifting the frame of the bed from the head side. You can also get bed raisers and keep them with you whenever you are traveling to raise your hotel beds temporarily.

Meeting and Greeting Others

Others may not realize it but for people with Ehlers-Danlos syndrome, hugging can be extremely painful and may cause multiple joint subluxations. This is especially true if the incoming hug is sudden and unexpected. So whenever you are meeting other people, be careful and try to stop others from hurting you unintentionally.

Twisting Positions

As a patient of Ehlers-Danlos syndrome, you have to be extra cautious while twisting. If it is absolutely necessary, make sure you move from your hips. If you twist from the waist only, your back might get hurt and it will take weeks before you can get out of bed. You must also take care not to cross your legs while sitting as it may dislocate your sacrum.

Choosing the Right Shoes

For people with flat feet, shoes that provide good arch support are a go-to. You can also add extra pads to make sure your regular shoes are supporting your arches well enough. If you commonly suffer from feet or leg subluxation, try wearing sneakers with arch supports. Choose a comfortable pair of sandals that supports your arches when you cannot wear sneakers.

Stabilizing Trachea and Neck

It is common for people with Ehlers-Danlos syndrome to have a sternum or trachea shift out of their respective places. Sometimes it occurs at night and your breathing can get cut off forcing such people to use a bi-pap machine. To avoid this dangerous event, use proper pillows that can hold your head and neck in position and avoid the trachea from collapsing. Numerous companies have launched their own versions of these pillows to help out all the people struggling with Ehlers-Danlos syndrome. Make sure you get a suitable size pillow for yourself.

Carrying Objects

Carrying objects can be extremely discomforting for people with Ehlers-Danlos syndrome, and it is well-justified. So instead of carrying heavy things in your hands or weighing down your shoulders with a heavy bag, try using a bag with wheels like the one you use in an airport. It will save you from a lot of trouble and potential joint complications.

Minimizing Pain and Flare-ups 

As a patient of Ehlers-Danlos, there will be days when your joints will hurt badly and you would not be able to concentrate on anything. To ease this pain, try taking a hot bubble bath. Additionally, invest in a good pair of thermal leggings that will provide compression and heat to your aching legs and help with flare-ups, especially in the winter season.

The Final Words

Living with EDS

Despite being a rather rare genetic disorder, many people around the world continue to live with Ehlers-Danlos syndrome. Because there is no permanent treatment for this condition, it can cause a strain on the daily lives of the patients; however, with the right techniques, tools, and mindset, it is possible to minimize complications, maximize safety and continue to live a normal life.

To your health and happiness, Doctor Danielle


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