Few people have heard of Ehlers-Danlos Syndrome, so it is not surprising that it is a relatively rare condition affecting only one in 5000, although the number could be as high as one in 200, because most doctors do not know what EDS is or how to recognize it, so 95% of those with the condition never get diagnosed. The reason I have chosen to write about Ehlers-Danlos today is because May is Ehlers-Danlos Syndrome awareness month, and because I, myself, did not know about this condition just over a year ago, I decided it would be a benefit for all you iGlobers out there to learn about it.
What exactly is EDS? Well, it is a group of inherited disorders that affect connective tissues – also known as blood vessel walls, joints, skin and bones. Connective tissues are what regulate one’s flexibility and elasticity using proteins, so because of EDS, those with the condition have overly flexible joints and stretchy skin. There are many different levels of EDS, with vascular EDS being the most severe. There are six defined types of Ehlers-Danlos Syndrome.
Vascular Ehlers-Danlos Syndrome is, as mentioned, the most severe type of Ehlers-Danlos Syndrome, and those affected by it often have a thin nose, thin upper lip, small ears, and prominent eyes. Their skin is thin and translucent and the veins are visible under the skin in fair-skinned people. Why is vascular Ehlers-Danlos Syndrome so dangerous? It is because this condition can weaken the aorta and the blood vessels leading to the spleen or the kidneys. Not only that, but this condition can also weaken the walls of the uterus or of the large intestine, which can easily rupture.
There are many symptoms of EDS. For one, overly flexible joints that are prone to dislocation and that can move beyond the normal range that the joint should be able to. Another symptom may be that the skin is overly soft and velvety, as well as stretchy with bruising and scarring in areas.
Those with Ehlers-Danlos Syndrome try to avoid certain sports which put strain on the hips, knees, and ankles, including contact sports, weightlifting, running, climbing stairs, and step aerobics. Not only that, but they must avoid chewing gum, hard rolls, and ice to protect the jaw joint. In addition, they cannot play brass or reed wind instruments to prevent a collapse of the lung. Swimming and playing the piano or violin is recommended for those with Ehlers-Danlos because they are safe activities.
As of today, there is no cure for Ehlers-Danlos Syndrome; however, for those with the condition, the doctor may prescribe an over-the-counter pain medicine such as ibuprofen, and keep the blood pressure low to avoid rupture of vessels. Not only that, but many with Ehlers-Danlos choose to take physical therapy to strengthen the muscles around a joint.
There are many support groups for those with Ehlers-Danlos Syndrome around the world, including in Australia, Canada, Denmark, France, Germany, Italy, Netherlands, Norway, Spain, Sweden, United Kingdom, and the United States. Not only that, but every year, there is a conference held, usually in Baltimore, Maryland, by the Ehlers Danlos National Foundation in the United States, and as a result, those with Ehlers-Danlos can meet others who suffer from the same condition and hold similar stories.
Sources:
"Ehlers-Danlos Syndrome." Mayo Clinic. Mayo Foundation for Medical Education and Research, n.d. Web. 24 May 2016.
"What Is Ehlers-Danlos Syndrome?" The Ehlers Danlos Society. The Ehlers Danlos Society, n.d. Web. 24 May 2016.
