EDS is a genetic disorder of collagen that can cause a large number of problems. Although thought to be very rare by many physicians, it turns out EDS is quite common. It affects primarily women, starting in childhood or young adulthood.

Common manifestations of EDS include joint pain, joint dislocations, migraines, gastrointestinal problems, numbness, and unpredictable allergic reactions. Many patients develop postural orthostatic tachycardia syndrome (POTS), a condition characterized by dizziness with standing or exertion.

Dr. Saperstein has diagnosed and treated over 3,000 patients with EDS and POTS. He and his team at the Center provide care for the numerous complications of EDS: joint pain, headaches, POTS, GI problems, and mast cell activation syndrome.

EDS Videos

EDS & Hypermobile EDS

What is EDS?

EDS Symptoms & Treatments

HSD Videos

Hypermobility Spectrum Disorder (HSD) vs. Ehlers-Danlos Syndrome (EDS) – Diagnostic Criteria

Hypermobility Spectrum Disorder (HSD) – Are We Asking the Right Questions (diagnostic criteria)

A Replay of VIRTUAL Q&A Session
Held on 04/22/2023
Topic: EDS, HSD, CM & CCI

Frequently Asked Questions

(from our social media followers)

Do numerous subluxations cause damage and the potential for more pain in those joints as one ages?

Yes. This is a common problem we see. It is important to get someone with EDS into physical therapy with a therapist knowledgeable about EDS.

Where is the line between hyper extension / instability vs subluxation? It's often unclear

It is often unclear. It is not so important what we call but rather to appreciate that there is abnormal movement of joints.

Do you find supplementing with collagen to be helpful in EDS patients?

No. The collagen you ingest gets broken down into building blocks (amino acids) to be absorbed from the intestines. Your body uses these building blocks to create collagen molecules. If you have a genetic problem that causes collagen to be made incorrectly (EDS), then you are still going o make collagen incorrectly no matter how much normal collagen you eat.

How is EDS diagnosed?

EDS is mainly diagnosed by looking at a number of clinical features. For example, how many joints are overly flexible, is the skin excessively stretchy or soft, are there abnormal types of scars, etc. You can find a detailed description of diagnostic criteria at https://www.ehlers-danlos.com/diagnostic-criteria/

If someone is not hypermobile and inflexible but have double-jointed jaw and thumb, could this be EDS?

Yes, EDS can show up in different ways. Not everyone with it is clearly hypermobile.

Can someone have more than one type of Ehlers-Danlos Syndromes (EDS)?

While it is possible to have more than one type of EDS, this is actually very uncommon. There is a lot of overlap between the different types of EDS, so it is common for people to wonder if they have more than one type. Evaluation by a doctor specialized in EDS will help.

Can a skin biopsy diagnose hEDS?

No hEDS cannot be diagnosed by skin biopsy.

If someone has the TNXB gene but not the other one for EDS, could that mean they have EDS or not?

Mutations in TNXB can cause EDS. It depends on the details of the mutation as to what it does or does not mean.

Would like to hear the explanation / relation for co-morbidities of EDS, POTS and Autism.

There is a lot of research, but no definitive answers. Mast cells, which are dysfunctional in many patients with EDS and POTS, seem to play a role in autism. There may be other inherited factors as well.

What genetic tests should someone get tested HSD?

There is no test for HSD at this time. What lab tests, if any, might be helpful should be determined by seeing a clinical knowledgeable about EDS and HSD.

Is there a relationship between hEDS and Syringomyelia?

Chiari Malformation is more common in people with hEDS. Some people develop Syringomyelia from Chiari Malformations. So, there is a potential link.

If someone had met the criteria for HSD when they were young but are now over 50 and the body is stiff and damaged, how can you test them for HSD?

It can be tricky assessing someone in their 50’s because features of hypermobility may no longer be present. However, we look at the “big picture” to include what you used to be able to do, what other symptoms and problems are present (in addition to joint hypermobility), and whether there are family members also affected.