What to Know About Ehlers Danlos Syndrome (EDS)
For the majority of people with hypermobile Ehlers-Danlos Syndrome (EDS), it will take an average of 10 years to be diagnosed. An eventual diagnosis is better than nothing, but there needs to be something done about the length of time it often takes.
Awareness is essential to improve treatment for those with this condition. Low awareness and understanding of EDS and its symptoms means that many will be told that their severe pain is all in their head. Others, meanwhile, undergo unnecessary medical treatments and surgeries. Still, others are diagnosed incorrectly – and, in turn, get treated for PT pain conditions they don’t really have.
Education will help, so here’s relevant information about this important and often debilitating condition.
Classical Ehlers Danlos Syndrome Types
Ehlers-Danlos Syndrome is a group of hereditary connective tissue disorders that causes a change in the protein, collagen. Collagen gives structure to your connective tissue and maintains the integrity of most organ systems in your body. This means including everything from your heart to your skin, ligaments, tendons, and muscles.
The most prevalent EDS types, of which there are 13, is hypermobile EDS (hEDS), formerly known as EDS type 3. In clients with abnormal collagen, the ligaments are weak and lack stiffness. Additionally, tendons are subject to tearing, compromising the stability of the joints. Treatment should be provided and exercise prescribed with this in mind.
Other types, like EDS type 4, have other symptoms in addition to acrogeria and other observable conditions. In this case, patients with vascular EDS have symptoms that include severe uterine, digestive, and arterial complications, which are not often seen in EDS types outside of Type 4.
Hypermobile EDS Symptoms
The most commonly recognized symptom of hEDS is joint hypermobility with symptoms of musculoskeletal pain and complications of joint instability. This includes recurrent subluxations or dislocations. The disorder also comes with a host of associated co-morbidities, such as dysautonomia, gastrointestinal dysfunction, and mast cell activation disorder to name just a few. To put it lightly, patients experience many symptoms after an EDS diagnosis.
Treatment Suggestions for Hypermobile EDS
After an EDS diagnosis, treatment starts. But what are the options for treatment? One of the most helpful is orthopedic physical therapy. Though it often takes years to properly diagnose this condition, physical therapy to combat severe pain from EDS is helpful for both adults and children.
As physical therapists, we focus on the musculoskeletal dysfunction but need to make an effort to learn about each client’s medical history and how it plays a role in the overall care of the person suffering from EDS symptoms. For instance, with postural orthostatic tachycardia syndrome, changes in body position may significantly impact the cardiovascular system. So, the therapist may want to limit the positional changes within the session or reduce standing time.
The other important thing to consider is that patients have widely varied symptoms and associated conditions. From one person to the next, the severity of their EDS symptoms might be vastly different. Also, note that the clinical presentation changes with age. Pain from hypermobility and instability is exchanged with stiffness and joint degeneration.
The Beighton Score, shown below, is the most well-known criterion for assessment. It assists in determining whether the patient is suffering from hypermobile EDS, vascular EDS, or another type. But, it is only one of many factors taken into account. The longer you wait to receive treatment, the worse your pain gets. Don’t let this pain get to the point where it deters you from seeking treatment. That doesn’t help anything.
Additional ones often include:
- Skin hyperextensibility
- Atrophic scarring
- Dental crowding
- Velvety skin
- Positive family history
These aren’t the only indicators. It’s recommended that you go over the information with a medical professional.
Physical Therapy Can Address Ehlers Danlos Syndrome Symptoms
Individuals with EDS have weak joints and connective tissues which makes them more likely to dislocate. Therefore, physical therapy provides appropriate exercises to strengthen the muscles and stabilize the joints. Physical therapy professionals also provide education recommendations regarding specific braces to help prevent joint dislocation.
Remember, pinpointing pain causes and getting a correct diagnosis are only the first steps.
If you have any suspicion that you might have a hypermobility syndrome or connective tissue disorder, find a physical therapy specialist in your area using the BetterPT clinic location tool website or by downloading the app. With hypermobile EDS, knowledge truly is power. View your treatment holistically and you can become a better self-advocate for your care. If you prefer to utilize at-home methods of treatment but still want the supervision of a physical therapy professional, consider telemedicine. The BetterTelehealth platform connects you with physical therapists ready and able to get you healthier.
Though there is yet to be a “cure,” physical therapy remains the hallmark of treatment. At specialty clinics like Zion Physical Therapy, who are a part of the BetterPT family of physical therapists, they take the time to learn about the unique differences in the provision of care for a client with hypermobile Ehlers-Danlos Syndrome. Rest assured that with the right physical therapist, you can treat EDS symptoms and reduce discomfort for an improved quality of life.
Dr. Meghan L. Mizrachi, DPT, OCS studied at Mercy College and is an Orthopedic Certified Specialist (OCS) through the American Physical Therapy Association (APTA).