Actor Jameela Jamil suffers from Ehlers-Danlos Syndrome (EDS) – All you need to know about this rare condition

British actor Jameela Jamil recently revealed that she suffers from a rare genetic condition called Ehlers-Danlos Syndrome (EDS).

According to the Ehlers-Danlos website, EDS is a group of 13 “heritable connective tissue disorders” caused by genetic changes that affect connective tissue.

Taking to her Instagram page, Jameela shared a video where she shows her stretchy facial skin and a bendy elbow joint. Pulling her own cheeks in the video, the ‘She-Hulk: Attorney at Law’ actor states, “Jesus Christ, that is not an app. That is not a filter. That is just my face. Look how elastic that is.”

She adds, “The reason it is so elastic is because I have something called EDS, which is Ehlers-Danlos Syndrome.”

The 36-year-old actor said she is ‘hypermobile’ which means, she has joint hypermobility with a large range of movements in either some or all her joints.

“It pertains to my joints, as you can see, nothing bends the right way, everything bends the wrong way,” she explains while extending her arm in the video.

The Ehlers-Danlos Society site states that each of the 13 types of EDS has its own set of features with distinct diagnostic criteria.

It further adds that some features are seen across all types of EDS — joint hypermobility, skin hyperextensibility, and tissue fragility.

The NHS explains that hypermobile EDS (hEDS) is the most common type; other types include classical EDS, vascular EDS, and kyphoscoliotic EDS.

Symptoms & complications

Those with hEDS such as Jameela may have:

• joint hypermobility

• loose, unstable joints that dislocate easily

• joint pain and clicking joints

• extreme tiredness

• skin that bruises easily

Some of the other problems include digestive issues such as heartburn and constipation, dizziness, an increased heart rate after standing up, problems with internal organs, such as mitral valve problems or organ prolapse, and problems with bladder control such as urinary incontinence.

Speaking about the condition Jameela said, it is a “really serious condition that impacts every single part of your body.”

She adds, “It is very dangerous to not know that you have it, because of the way that it impacts bruising, bleeding, and healing. If you want to have a baby, it is so important that your doctor knows you have EDS, because it makes pregnancy so much more complicated.”

She also informs that EDS can make you clumsier and makes your joints swell sometimes.

“It means that you dislocate, that your teeth are harder to work on… Look it up, see if you have the symptoms if you are struggling with your joints if you are struggling with accidents all the time. Please find out before it is too late,” the actor implores.

Dr Reshu Agrawal, consultant, internal medicine, Manipal Hospitals, Baner-Pune, India told the Indian Express, “Basically, EDS is caused by faults in certain genes which makes connective tissues weaker. The symptoms vary from person-to-person and depend on the type of EDS. Some of the common symptoms include extremely-flexible joints leading to easy dislocation, early arthritis, and fragile skin that bruises easily,” she said.

Agreeing, Dr Sunilkumar Singh, consultant, rheumatology, Kokilaben Dhirubhai Ambani Hospital Mumbai, India, reportedly said that the correct treatment can help manage the symptoms and prevent complications. However, a patient needs regular check-ups and monitoring to avoid complications.

He is quoted as saying, “Physiotherapy to strengthen the muscles and stabilise joints can minimise the risk of dislocation. It is important to prevent injuries as wound healing is delayed. Vitamin C supplementation can promote wound healing and help the skin fragility.”

Diagnosis & treatment

Dr Bibhas Kar, consultant genetics, Kokilaben Dhirubhai Ambani Hospital Mumbai, India, also weighs in. He reportedly said that EDS can be diagnosed in the following way:

* Physical examination by a doctor

* Imaging – X-RAY and CT scan

* Biopsy (skin sample)

* Genetic testing

Dr Kar states, “Once EDS is suspected, a genetic specialist should be consulted, who will take the medical and family history, assess the symptoms, and may carry out a genetic blood test to confirm EDS. It is confirmed through gene-sequencing using the next-generation sequencing (NGS) platform.”

However, the treatment plan should be customised based on the diagnosis as — it can help with early prevention, the doctor advises.

Also, “Genetic counselling is important, as once EDS is detected, the patient can learn more about the causes, how it is inherited and chances of future transmission.”

Treatment

Though at present there is no cure for this condition. Dr Agarwal states that “Supportive treatment like physiotherapy and occupational therapy may be helpful.”

But in the case of valvular heart disease, medications from a cardiologist can reduce the risk of cardiac complications. However, for repeated dislocation of joints or for the repair of ruptured blood vessels, surgical treatment may be needed informs Dr Singh.