Jameela Jamil Star of The Good Place recently posted a video on her Instagram page, in which she stretched out her cheeks, and wrote, "I'm fine." Clear to anyone what she meant, when a commentator asked about the Ehlers-Danlos syndrome (EDS) (19459004) (EDS), Jamil replied, "Indeed."
This seems to be the first time be confirmed that Jamil has EDS, a rare connective tissue disease. However, she has previously highlighted her symptoms. For example, in October 201
Here's what you need to know about this complex condition.
EDS is not a single disease, but a group of diseases.
There are 13 EDS subtypes each of which is a separate disorder. And all have one thing in common: Abnormalities of connective tissue (the fibrous tissue that makes up tendons and ligaments), Calvin J. Brown a professor of rheumatology at the Feinberg School of Medicine at Northwestern University. says SELF.
These conditions are thought to be caused by genetic mutations that affect the body's production of collagen a protein essential for maintaining the strength and structure of connective tissue in the body. National Institutes of Health . Sometimes these genetic mutations are inherited, but in other cases there is no family history. And we still do not know exactly what causes these genetic problems.
The "classic" presentation of EDS, usually explains the Mayo Clinic overly flexible joints, stretchy skin and delicate skin does not heal well or scar scarcely. The severity of these symptoms can vary from person to person. "Symptoms are generally present and are not noticed until they are young, because people with EDS are born with them," says Dr. Brown.
Most people with EDS find that they first have loose joints, Howard Smith MD, director of the Lupus Clinic in the Department of Rheumatology and Immunology of the Cleveland Clinic, versus SELF. "That's why people with EDS often suffer from sprains and dislocations, as well as joint pain, joint pain and arthritis," says Smith.
The other EDS symptoms can also cause problems. For example: "If the skin is more elastic than normal, it can lead to mild bruising, scarring, and poor wound healing," explains Dr. Smith. [And] Tissues such as arteries and organs of the body (heart and intestine) are not as strong as they should be and they can break or function normally.
Some EDS patients experience abdominal pain and bowel abnormalities, Sarmad Almansour an internal medicine and rheumatology specialist at Sinai-Grace Hospital, Detroit Medical Center, reports SELF.
Another severe form of the disease, the vascular Ehlers-Danlos syndrome may weaken the aorta and other arteries in the body and potentially cause a dangerous break . It can also weaken the walls of the colon or uterus, says the Mayo Clinic.
It can sometimes be difficult to accurately diagnose EDS.
First of all, there is no objective test, such as a blood test or an X ray, that confirms that a patient has the condition. EDS can also be confused with other conditions. "There are more than 200 other similar connective tissue diseases," says Dr. Smith.
But because the disorder has a strong genetic component, characteristic symptoms and a family history of EDS are often sufficient to make a diagnosis, says Mayo Clinic .
Patients could also be referred for genetic testing to find out which EDS subtype exists and rule out other problems. However, researchers have identified the exact genetic mutation only for some of the subtypes, so it's not always helpful, Dr. Brown. In addition, only a few centers can currently perform these tests.
There is currently no cure for EDS.
"All treatments are aimed at treating the symptoms and living with the disease", Dr. med. Brown says. In general, patients may be given medication to relieve pain and control blood pressure abnormalities associated with EDS, [May says the Mayo Clinic .
But unfortunately, many EDS patients suffer from persistent, widespread pain, Dr. Brown. "The scientific basis for this is currently unknown and the subject of some research," he says. "And traditional pain medications do not work well, so other pain management strategies are needed."
Improving muscle strength and muscle tone can also help stabilize and protect the joints. Therefore, Dr. Brown also physiotherapy, guided exercises, yoga and Pilates. However, many patients may need to avoid strenuous activities, such as contact sports, because their joints and soft skin are more prone to injury. Some patients may also benefit from cognitive-behavioral therapy (CBT) to support the treatment of pain as well as stress reduction and groups.
In some cases, surgery may be required to repair damage from repeated dislocation of the joints. Surgery may also be recommended if a patient has a "weakening of the aorta" Almansour, as it increases the risk of an aortic aneurysm.
Above all, it is important to have a competent team around you to help you make decisions about managing EDS and finding a treatment plan that makes sense to you.