20 Myths About Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) can be defined as a group of diseases that weakens the body’s connective tissues. Connective tissues are present throughout the body e.g. in bones, tendons, ligaments, lungs, and blood vessels so that Ehlers-Danlos syndrome affects the whole body. Ehlers-Danlos syndrome makes the skin thinner as well as vulnerable to bruising. It also weakens other body organs and blood vessels. Ehlers Danlos syndrome also has serious potential complications during pregnancy (rupture of the uterus).

Ehlers-Danlos syndrome is classified into thirteen subtypes and every type have different signs and symptoms. Some symptoms are common between every type of Ehlers-Danlos syndrome like subluxation of joints, hypermobility, and skin elasticity. The patient’s experience with Ehlers-Danlos syndrome is their own, and May not comparable with other persons experience. Here is some general information and myths about Ehlers-Danlos syndrome.

What Causes Ehlers-Danlos Syndrome?

In most cases Ehlers-Danlos syndrome is an inherited condition but not always. Sometimes Ehlers-Danlos syndrome is caused by a spontaneous gene mutation. Deformities in genes affect the normal formation of collagen. Hypermobile Ehlers-Danlos syndrome (hEDS)/is most common type and the percentage of its transmission from parent to children is 50%.

Myths About Ehlers-Danlos Syndrome

Myths about Ehlers-Danlos Syndrome! rum rampant among the people and medical professionals. Breaking these stigmas is important for promoting awareness about this misunderstood syndrome. This will help find better treatment options for patients with Ehlers Danlos Syndrome.

Myth# 1: Depression Is A Must Symptom in Patients of Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome and depression are two different diseases. Signs and symptoms of both illnesses vary from each other. Some patients have both Ehlers-Danlos syndrome and depression, whereas some patients have one disease at a time. As both are different from each other, so using Ehlers-Danlos syndrome and depression interchangeably or thinking a patient will have both of the illnesses simultaneously, is wrong.

Myth# 2: Ehlers-Danlos Syndrome Is Not Painful.

People claim that Ehlers-Danlos Syndrome is not painful. But in reality, Ehlers-Danlos syndrome can be painfully ranging from mild to severe. Person flexibility with Ehlers-Danlos Syndrome doesn’t eliminate the pain. Dislocation of joints can cause severe pain.

Myth# 3: Ehlers-Danlos Syndrome is a hereditary illness.

Genetics plays a vital role in passing disease from one generation to another. Mostly it is thought that Ehlers-Danlos syndrome is acquired only if the patient is having someone from his parents or family with Ehlers-Danlos syndrome. But, this concept is false. Genetics remains one of the major causes of Ehlers-Danlos syndrome, but this is not the only cause for Ehlers-Danlos syndrome. A person can become a patient of Ehlers-Danlos syndrome, without having any familial roots with Ehlers-Danlos syndrome.

Myth# 4: Having extra flexibility is cool.

Everyone should aware of the fact that there will remain a big difference between hypermobility and flexibility. Because having Ehlers-Danlos Syndrome can lead to severe kind of pain in joints as well as damage in the body parts of the patient. Experiencing dislocations, pain and subluxations cannot consider as a part of the fun. Similarly, having limitations in abilities and movements is not amusing.

Myth# 5: Ehlers-Danlos syndrome happens in persons with a specific type of body.

It is thought that Ehlers-Danlos Syndrome happens in persons with thin and very slim bodies. However, it is just a myth, Ehlers-Danlos syndrome is not confined to a specific kind of body or ethnicity. Several pathologies and aetiologies lead to the occurrence of Ehlers-Danlos Syndrome.

Myth# 6: Patients with Ehlers-Danlos syndrome usually exaggerate their pain or symptoms.

Patients with Ehlers-Danlos syndrome are taken very easily by their friends and family. When they complain about having severe symptoms or excruciating pain, they are told that all of this is happening just inside their heads. Therefore, Ehlers-Danlos Syndrome is a very serious issue and its patient’s deal with pain is real. It is necessary to considered them and they need be given proper care and treatment.

Myth# 7: Ehlers-Danlos syndrome is only an illness of joints.

Ehlers-Danlos syndrome not only affects the joints but also the muscles, skin, ligaments, tendons, gums, blood vessels, and eyes. Because Ehlers-Danlos Syndrome affects the major tissue such as connective tissue present throughout the body, so considering its presence in only the joints can be outrageous. As it is clear that Ehlers-Danlos Syndrome affects connective tissue, so it can create medical issues anywhere in the body. 

Myth# 8: Patients with Ehlers-Danlos Syndrome Will Always Have Stretchy Skin.

Although extensible skin is one of the major symptoms in patients of Ehlers-Danlos syndrome, however considering stretchy skin as a must in patients with EDS, is not right. The condition of skin with Ehlers-Danlos syndrome also depends on your natural skin type. Stretchy skin is mostly associated with the classical type of Ehlers-Danlos Syndrome. Other types also have down the involvement of skin like bruising, scaring, velvety, and translucent.

Myth# 9: Exercises Are Always Helpful And A Lot  Of  Exercises Are Necessary For Managing Symptoms Of Ehlers-Danlos Syndrome.

Persons with Ehlers-Danlos Syndrome are already vulnerable to injuries and suggesting a lot of tricky exercises to these patients, can be proved disastrous for them. Although, exercises are recommended in almost all kinds of illnesses, however patients having Ehlers-Danlos syndrome, show more potential for injuries. Therefore, they are recommended to plan out their exercises with their doctor as well as with their physiotherapist to avoid any kind of occurrence of injury.

Myth# 10: Young Patients Cannot Have Pain.

Pain does not follow the rule of age discrimination. Even very young people looking fine can experience higher levels of pain intensity. Disregarding the pain of patients, thinking that they are quite young to claim this problem can be damaging for them.

Myth# 11: Dislocations And Subluxations Do Not Hurt A Lot.

Patients with Ehlers-Danlos Syndrome experience usual subluxations as well as dislocations. Their family members and friends think that they are habitual of dislocations and subluxations, so are used to the respective pain as well, which happens while all this taking place. It is wrong to think like this.

Myth # 12: Patient With Ehlers-Danlos Syndrome Looks Fine

Most of the patients and their relatives did not take Ehlers-Danlos Syndrome as a serious disease because the patient looks normal. Illness is not always visible; a patient’s appearance is not the true reflection of his internal body condition.

Myth# 13: All patients with Ehlers -Danlos Syndrome Have The Same Symptoms

Everyone is different and so that the way they are affected by Ehlers-Danlos Syndrome will different. It is not a good idea to compare the symptoms of one patient with other patients with Ehlers-Danlos syndrome. It is also a misconception that tall and thin women are only get affected by Ehlers-Danlos Syndrome. This syndrome can affect people of all ages, gender, ethnicity, and type.

Myth# 14: Symptoms of Ehlers Danlos Syndrome Are The Same Throughout The Life

Currently, there is no cure for Ehlers-Danlos Syndrome and it is an ongoing condition. Ehlers-Danlos Syndrome is not a progressive condition which means it doesn’t get worse with time but the human body has changed with time and so are the symptoms with this syndrome changes. As the human body ages, the elasticity and flexibility of the body also change. This natural process can alter the symptoms of Ehlers-Danlos Syndrome. Stress and strain can also change the symptoms of this syndrome

Myth# 15: Ehlers-Danlos Syndrome Is Cure When The Patient Stops Using A Wheel Chair

The severity of the symptoms can change from day to day but it doesn’t mean that patient is the cure. There is no cure for Ehlers-Danlos Syndrome. A person may require a wheelchair for one day to walk and the very next day he wouldn’t need any support to walk.

Myth# 16: Classic Ehlers-Danlos Syndrome Is The Most Common Type

Classic Ehlers-Danlos Syndrome is the first type that has been discovered but it doesn’t mean it is the coolest type of Ehlers-Danlos Syndrome. Hypermobile Ehlers-Danlos Syndrome is the most common type because 80 -90 % of patients diagnosed with Ehlers-Danlos Syndrome are of hypermobile Ehlers-Danlos Syndrome. However, classic Ehlers -Danlos Syndrome.is the second most common type people are suffering from.

Myth# 17: Genetic testing is the only way to diagnose hypermobile Ehlers Danlos Syndrome

Ehlers-Danlos Syndrome is caused by a mutation in almost 19 genes. Hypermobile Ehlers- Danlos Syndrome is the most common type of this syndrome but it is not known which gene is responsible for causing hypermobile Ehlers-Danlos Syndrome. However, sometimes generating testing is done to rule out other types of syndrome.

Myth# 18: Brighton Test Sore Is Used To Diagnose Skin Elasticity

Stretchy akin, flexible joints and bruising are among the most common symptoms of Ehlers- Danlos Syndrome. The texture and elasticity of the skin are important in the diagnosis of Ehlers Danlos Syndrome but the beighton test is used for checking the joint elasticity, not for skin elasticity. Beighton score depends on the flexibility of performing five movements including little finger, thumb, elbow, knee, and spine. Generalized joint hypermobility also depends on age.

Myth# 19: Lifestyle Changes Can Cure Ehlers-Danlos Syndrome

Lifestyle changes cannot fix the mutation in genes. Although lifestyle changes can minimize some of the symptoms with Ehlers-Danlos Syndrome they cannot cure it. Currently, there is no cure for Ehlers-Danlos Syndrome. Every person with this syndrome has a different condition – it means if one thing affects positively one person it is not necessary to affect other people in the same.

Myth# 20: There Is No Treatment For Ehlers-Danlos Syndrome

It is true that still there is no permanent cure for Ehlers-Danlos Syndrome but many treatments are available for controlling the symptoms. Treatment can help a lot with pain and subluxation of joints. Massage can also help to deal with the complications of Ehlers-Danlos Syndrome.

What Are The Cmlications Of Ehlers-Danlos Syndrome?

Compilation depends on the severity of the signs and symptoms you have. For example, extra-flexible joints can cause joint dislocation and early onset of arthritis. Similarly, elastic skin develops prominent scarring. Types of Ehlers-Danlos Syndrome that is associated with blood vessels may cause rupture of blood vessels. Moreover, during pregnancy, there is a great risk of rupturing the uterus.

How To Treat Ehlers-Danlos Syndrome?

To control the pain associated with Ehlers-Danlos Syndrome can be treated with certain painkillers includes acetaminophen, ibuprofen, and naproxen sodium. Sometimes stronger medications are prescribed to treat severe injuries. Some types of Ehlers-Danlos syndrome are associated with blood vessels so in this case, it is necessary to take blood pressure medicines to reduce pressure on blood vessels.

Home Remedies To Cope Up With Ehlers-Danlos Syndrome

It is important to prevent injuries with Ehlers-Danlos Syndrome because it can complex the condition. The complication can be prevented by making following things a part of the routine.

• Minimize stress on knee and hip joint by avoiding contact sports and weight lifting. Try to do light exercise and play sports like walking, swimming, and recreational biking.
• To minimize the risk of injury to the jaw avoid chewing gums and ice.
• To prevent ankle strain wear supportive shoes.
• Sleep on the comfortable mattress to provide cushioning and support to painful joints.

CONCLUSION

Ehlers Danlos syndrome is a heterogeneous group of inherited connective tissue disorders. Many people are confused about ehler danlos syndrome and deny its existence. But it is real and affected many people all over the world. All types of ehlers danlos syndrome are life-threatening but most people live a normal average life. Moreover, there are many myths about ehler danlos syndrome that are depressing the patients and affecting the quality of life. Patients with Ehlers Danlos syndrome should know all the facts and myths about the disorder.