What specialty treats Ehlers-Danlos syndrome?

Successful treatment of this complex syndrome requires a team with extensive knowledge of genetics, orthopedics, pediatrics, neurology, neuroradiology, neuropsychology, and neuroendocrinology, in addition to skilled surgeons who specialize in neurosurgery and cerebrovascular surgery.

Do Rheumatologists treat EDS?

The accurate diagnosis of EDS can allow specific management, family screening and prenatal diagnosis. The rheumatologist can play an important role in the diagnosis of EDS and is central to the ongoing management of many EDS patients.

What doctor treats hypermobility syndrome?

Which types of doctors treat hypermobility syndrome? Doctors who treat hypermobility syndrome include general-medicine doctors, family medicine doctors, and internists, as well as rheumatologists, orthopedists, and physical-medicine physicians.

Can an orthopedist diagnose Ehlers-Danlos Syndrome?

1, 3) Orthopedic surgeons may encounter patients with hEDS due to chronic pain and joint instability. Hypermobile EDS is an autosomal dominant disorder but the gene responsible for its clinical manifestations is currently unknown. 3) Therefore, the diagnosis of hEDS is clinical.

Who can diagnose Ehlers-Danlos hypermobility?

Your GP may refer you to a joint specialist (rheumatologist) if you have problems with your joints and they suspect EDS. If there's a possibility you may have 1 of the rare types of EDS, your GP can refer you to your local genetics service for an assessment.

Managing Ehlers-Danlos syndrome: a physician's perspective

How do I get tested for Ehlers-Danlos?

Is Ehlers-Danlos autoimmune?

In the United States, two million people live with rheumatoid arthritis, and another 1.5 million live with lupus. A much rarer group of connective tissue disorders is called Ehlers-Danlos syndrome. Unlike the diseases noted above, Ehlers-Danlos syndrome is not an autoimmune condition, it's an inherited disorder.

Do steroids help Ehlers-Danlos?

Steroids have been found to be helpful in acute exacerbation of joint pains. However, care must be taken to avoid long-term use to prevent steroid-related side effects. No trials have been conducted to test medications for NP in EDS patients.

Does Botox help EDS?

Botulinum toxin may break such compensation, leading to head and neck instability, worsening of pain and even serious injuries. Extra caution should be exercised for Botulinum toxin injection in patients with hypermobility EDS. Muscles involving head and neck stabilization should be avoided.

Is Ehlers-Danlos inherited from mother or father?

For a child to be affected both parents must pass on an EDS gene. With each pregnancy there is a 25% chance that each child will have the disorder.

Should I see a rheumatologist for hypermobility?

Referral Criteria. It is not necessary to refer patients with hypermobility to the Rheumatology service unless you are concerned about an alternative diagnosis. The diagnosis of hypermobility and Hypermobile Ehlers Danlos Syndrome (hEDS) should take place in primary care (see The Ehlers-Danlos Syndromes Toolkit).

What mimics Ehlers-Danlos syndrome?

Tnxb-/- mice showed progressive skin hyperextensibility, similar to individuals with Ehlers-Danlos syndrome. Biomechanical testing confirmed increased deformability and reduced tensile strength of their skin.

Is Ehlers-Danlos syndrome neurological?

EDS is associated with a variety of neuromuscular features, and vice versa, a variety of congenital myopathies display joint hypermobility and, to a lesser extent skin changes.

Can a physiotherapist diagnose EDS?

Although there is no cure for Ehlers-Danlos syndrome, physiotherapy is a very effective way to minimise the symptoms and help maintain a healthy and active lifestyle. Physio.co.uk have specialist rheumatological physiotherapists who are experienced at assessing and treating Ehlers-Danlos syndrome.

Can a geneticist diagnose EDS?

If you have EDS Type I or Type II, genetic testing is usually available through a blood test. But, the genetic test only finds about 50% (1 out of every 2) of cases. Your geneticist can also diagnose this type of EDS without testing.

Is Ehlers-Danlos related to rheumatoid arthritis?

There is about one case of Ehlers-Danlos for every 50 with rheumatoid arthritis or every five people with lupus. Features common to most of the 13 include very mobile joints that dislocate easily, skin that you see through, poor wound healing with a specific type of scars.

Is there surgery for EDS?

Surgery to treat problems caused by Ehlers-Danlos Syndrome is best performed at a major spine center with doctors trained and experienced in the most up-to-date, minimally invasive techniques. Minimally invasive surgery means a quick recovery, less pain, and less scarring.

Can people with Ehlers Danlos have surgery?

Orthopaedic surgery in the Ehlers–Danlos syndromes is controversial and how much of a role it should play in their management is unclear. Conservative treatment such as physiotherapy is preferable, but if this fails then for some people joint stabilisation and nerve decompression procedures can provide relief.

Can Ehlers Danlos cause hip pain?

For hips in particular, patients with EDS can put increased stress on the labrum (the cartilage rimming the outside of the socket), and be more prone to labral tears of the hip. This will usually manifest as pain near the front of the hip, near the groin.

What does an EDS flare feel like?

Day 4 of the Photo-A-Day Challenge - What does a flare up (of symptoms) look like for you? "A "flare up" with EDS for me is extreme pain with my joints, a low grade fever, and subluxations of my fingers and other joints. "Today you are actually witnessing one of the longest flares I've had since being diagnosed.

What medications should be avoided with EDS?

Official Answer. With Ehlers-Danlos syndrome (EDS), experts recommend avoiding drugs that increase your risk of bleeding—such as anticoagulants and antiplatelet agents—because those affected with EDS are at higher risk for bruising and injury.

What is the best pain relief for joint hypermobility?

Paracetamol and anti-inflammatory painkillers (like ibuprofen, which comes as tablets, gels and sprays) may help to ease pain.

Does EDS make you look younger?

Due to the collagen in the skin being extra stretchy, many EDS patients experience a lack of wrinkles as they age. This collagen may help EDS patients look younger and can also cause skin to feel extremely soft. Doctor's even describe the skin as “velvet-soft”.

Can diet help EDS?

Without a doubt diet can influence every system that those with EDS struggle with – for better or for worse. Ideally, you want the foods you eat to minimize stress, inflammation, and reactivity as well as support physical functioning.

Is EDS linked to autism?

Recent research suggests that EDS may share strong links with autism. Case studies have previously been published identifying individuals who are both on the autism spectrum and have a diagnosis of EDS.