Click Here to Download this Blog Post – “Benign” Does Not Mean “Easy”: The Reality of Living with hEDS

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

If you look up Hypermobile Ehlers-Danlos Syndrome (hEDS) in a medical dictionary, you might see the word “benign.”

In medical speak, “benign” simply means “not fatal.” It means you have a normal life expectancy. But for the patients living with it, that word can feel insulting.

While hEDS won’t shorten your life, it can drastically affect the quality of your life. It is important to acknowledge that “benign” conditions can still be disabling, sometimes leaving patients bedridden or requiring a wheelchair, not because they are dying, but because their body cannot function upright.

The Brain and The Gut: The “Invisible” Struggle

Beyond the joint pain, two massive areas of suffering often get overlooked because they are invisible from the outside:

1. The Starving Brain (Cognitive Dysfunction) Remember the “blood pooling” we discussed? When you stand up and blood stays in your legs, your brain doesn’t get enough oxygen.

• The Result: This isn’t just feeling a little tired. It causes severe brain fog, memory loss, and difficulty focusing.
• The Misdiagnosis: Because your brain is struggling, you might be diagnosed with ADD/ADHD, anxiety, or depression. These are often just symptoms of a brain that is chronically under-fueled.

2. The Traffic Jam in the Stomach (GI Issues) The same faulty nerves that control your blood vessels also control your digestion. They are supposed to tell your stomach to move food along. When they misfire, traffic stops.

• Gastroparesis: This means “paralyzed stomach.” Food sits there too long, causing nausea.
• IBS: Alternating between constipation and diarrhea is common.
• Crucial Note: In hEDS, the gut is slow or irritable. In the rare Vascular EDS, the gut is fragile and prone to rupture. Knowing the difference (via genetic testing if needed) is vital for your peace of mind.

The Power of a Name

The patient in our previous story was diagnosed at age 48. That is decades of wondering, “What is wrong with me?”

This is why getting a diagnosis—even late in life—is a medical intervention all by itself. We often see patients cry with joy when they finally get the news.

• They aren’t crying because they are sick.
• They are crying because they are validated.

They finally know they aren’t “crazy,” “lazy,” or “just anxious.” They have a known, physiological condition.

There is Hope

While there isn’t a “cure” for hEDS, understanding that your fatigue and brain fog are caused by Dysautonomia (the nervous system glitch) opens the door to treatments that actually work.

By treating the nervous system—integratively and with medication—many patients regain function they thought was lost forever. You may not be able to change your collagen, but you can retrain your nerves.

Where to Seek Expert Care?

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading dysautonomia treatment center is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034

About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace

Click Here to Download this Blog Post – The “It’s All in Your Head” Myth: Why hEDS is So Hard to Diagnose

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

If you are reading this, you might know the feeling of being a “medical mystery.”

For many people with Hypermobile Ehlers-Danlos Syndrome (hEDS) or HSD, the struggle doesn’t start in adulthood—it starts in the playground. You might have gone through grade school, high school, and college feeling constantly tired, struggling with “growing pains” that never went away, or finding it hard to focus because of brain fog.

You likely tried to push through, but eventually, the pain, fatigue, and joint issues (subluxations) made it impossible to function at school or work.

The Cycle of Misdiagnosis

By the time many patients find a specialist, they have often seen dozens of doctors. The story is almost always the same:

1. You explain you hurt everywhere.
2. The tests come back “normal.”
3. The doctor labels you with “Anxiety” or a “Functional Disorder.”

What is a “Functional Disorder”? This is a medical term that essentially means, “The structure of your organs looks fine, so we don’t know why they aren’t working.” It is a frustrating label that often leaves patients feeling dismissed.

Why Do Doctors Miss It?

It isn’t necessarily that the doctors are unobservant; it is that the medical system is set up to look at body parts separately, not the whole person.

hEDS and HSD are multi-system disorders. They don’t just affect your joints. Because your connective tissue is everywhere, your symptoms are everywhere:

• Urinary: Bladder issues or frequency.
• GI: Stomach pain, nausea, or digestion problems.
• Ocular: Eye strain or vision changes.
• Neurological: Headaches, dizziness, or nerve pain.

A urologist only looks at the bladder. A neurologist only looks at the brain. Because they struggle to tie these completely different problems into one single syndrome, they default to the easiest explanation: “It must be psychiatric.”

The “Anxiety” Reality Check

It is true that many patients with hEDS/HSD struggle with anxiety and depression. However, it is vital to get the cause and effect right.

Doctors often think you are in pain because you are anxious. The reality is usually the opposite: You are anxious because you are in chronic pain.

Living with a debilitating, undiagnosed illness that limits your ability to function is traumatic. The mental health struggles are a secondary result of the physical suffering—not the cause of it. You aren’t imagining the pain; you are just reacting to a body that is struggling to keep up.

Where to Seek Expert Care?

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading dysautonomia treatment center is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034

About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace

Click Here to Download this Blog Post – The One We Can’t Miss: Understanding Vascular EDS

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

In the world of Ehlers-Danlos Syndrome, there is one specific type that doctors are always on high alert for. It is rare, but it is the one diagnosis we absolutely must make early.

It is called Vascular EDS (vEDS).

Why is this one different?

As we discussed in the last post, the common type (hEDS) can be painful and exhausting, but it is benign—meaning you have a normal life expectancy.

Vascular EDS is different. Because it affects the strength of your major blood vessels and organs, it can be life-threatening. The average life expectancy for untreated patients is often in the 40s. This is why getting a diagnosis before an emergency happens is the most important goal of any EDS specialist.

The “Silent” Disguise

Here is the tricky part: Vascular EDS often doesn’t look like EDS.

If you have the common type (hEDS), you probably have super-stretchy skin and very loose elbows and knees.

• vEDS patients usually do NOT have stretchy skin.
• vEDS patients usually do NOT have loose large joints (though their fingers or toes might be flexible).

Because they don’t look like the “textbook” flexible patient, they are harder to spot during a physical exam. This requires doctors (and patients) to be detectives.

The Red Flags: It’s All in the History

Since the physical signs are subtle, the clues almost always come from your medical history or your family tree.

You should alert your doctor immediately if you or a family member have a history of:

1. Aneurysms or Dissections: This is when a blood vessel bulges or tears. If this happened to a relative at a young age, it is a major warning sign.
2. Organ Rupture : A history of intestines or bowels tearing (perforation) without a clear cause.
3. Surgical Complications: If tissue tore unexpectedly or failed to heal during surgery, especially during childbirth or gynecological procedures.
4. Severe Bleeding: We aren’t just talking about easy bruising (which is common in all types). We mean significant, hard-to-stop bleeding.

The Takeaway

If you have hypermobility and pain but none of the red flags above, the odds are overwhelmingly in your favor that you have the benign type (hEDS).

However, if your family history includes sudden vascular events or organ trouble, do not ignore it. Genetic testing can confirm vEDS, allowing you to take preventative steps that can save your life.

Where to Seek Expert Care?

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading dysautonomia treatment center is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034

About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace

Click Here to Download this Blog Post – Safety First: Ruling Out the “Red Flags”

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

When you visit a specialist for connective tissue disorders, the first appointment might feel a bit intense. The doctor will ask about your family history, heart health, and specific symptoms.

They aren’t just being nosy. They are performing a critical safety check called a Differential Diagnosis.

The “Big Three” We Must Rule Out

Before a doctor can diagnose you with hEDS or HSD, they must first make sure you don’t have one of the rarer, life-threatening conditions. These conditions affect the aorta (the main artery from the heart) and blood vessels, so missing them is not an option.

Doctors specifically look for signs of:

1. Marfan Syndrome : Known for affecting the eyes, heart valves, and aorta.
2. Vascular EDS (vEDS): The type that causes organ rupture.
3. Loeys-Dietz Syndrome: A condition similar to Marfan’s that affects blood vessels.

The Process of Elimination If the doctor checks your heart and history and rules these “scary” conditions out, they can breathe a sigh of relief. By eliminating the dangerous imposters, what is usually left is a hypermobility disorder like hEDS or HSD.

The Back Door Diagnosis

Interestingly, most patients don’t walk into the clinic saying, “I think my joints are too loose.” They walk in saying, “I feel dizzy, my heart races, and my stomach hurts.”

The Autonomic Connection We often diagnose hEDS backward.

1. The Complaint: You come in for P&S Dysfunction (dizziness, fainting, digestion issues).
2. The Investigation: We take a detailed history of your autonomic nervous system.
3. The Discovery: While examining you, we notice your skin is stretchy and your Beighton Score (flexibility) is high.

We find that the loose joints (hEDS) are actually the cause of the nervous system glitches. In our experience, nearly 100% of hEDS/HSD patients struggle with this combination of loose joints and “busted wiring” (Orthostatic and P&S Dysfunction).

The Good News

This might sound overwhelming, but there is a very bright silver lining.

Unlike Marfan Syndrome or Vascular EDS, Hypermobile EDS (hEDS) has a normal life expectancy. It is a condition that affects your quality of life (pain and fatigue), not the length of your life. With the right management of your nervous system and joints, you can live a full, long life.

Where to Seek Expert Care?

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading dysautonomia treatment center is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034

About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace

Click Here to Download this Blog Post – hEDS vs. HSD: Solving the Genetic Mystery

By Dr. Nicholas L. DePace, M..D., F.A.C.C – Cardiologist specializing in autonomic dysfunction, Ehlers-Danlos syndrome and POTS.

If you are navigating the world of joint pain and dizziness, you will likely hear two terms used constantly: hEDS (Hypermobile Ehlers-Danlos Syndrome) and HSD (Hypermobility Spectrum Disorder).

Patients often ask, “What is the difference? Is one worse than the other?”

The answer lies in our DNA, but it is a bit of a mystery story.

The “Missing Gene” of hEDS

Doctors strongly suspect that hEDS is Autosomal Dominant.

• Translation: If you have it, there is a 50/50 chance you will pass it to your children.

However, unlike the other types of EDS, scientists haven’t found the specific gene yet. We know it runs in families; we know what it looks like, but we can’t point to the exact spot on your DNA map that causes it.

HSD: The “Sibling” Diagnosis

Hypermobility Spectrum Disorder (HSD) is essentially the sibling of hEDS.

You receive this diagnosis when you have the symptoms—the flexible joints, the pain, the fatigue—but you don’t quite meet the strict checklist for hEDS, or your family history is unclear.

The Bottom Line: Whether your chart says hEDS or HSD, the treatment is largely the same because the physical problems are almost identical.

The Rare Cousins: Vascular and Classical EDS

In specialized clinics, hEDS and HSD make up the vast majority of patients. It is very rare to walk in and find a case of Vascular EDS or Classical EDS.

• These types do have known genetic markers.
• If a doctor suspects these (due to dangerous symptoms like organ rupture or extremely stretchy skin), they will order genetic testing to confirm it.

The Real Culprit: Sympathetic & Parasympathetic Dysfunction

Whether you are labeled hEDS or HSD, you likely aren’t just dealing with loose joints. You are dealing with a “wiring” problem that causes two main issues:

1.The Gas Pedal: Sympathetic Dysfunction and Orthostatic Symptoms

• What happens: You stand up, and your body forgets to pump blood upward.
• The Result: Orthostatic Dysfunction. You feel dizzy, your heart races, and you have chronic fatigue.

2. The Brake Pedal: Parasympathetic Dysfunction

• What happens: Your body over-reacts to stress with too much “calming” signal.
• The Result: Syncope (fainting), digestive issues (stomach stops moving), anxiety, and inflammation.
• Crucially: This “wiring glitch” actually amplifies pain. It turns the volume knob up on your nerves, making your joints hurt more than they should.

The “Fibromyalgia” Trap

This pain amplification leads to one of the most common mistakes in modern medicine.

At least one-third of hEDS/HSD patients have visited a rheumatologist and been diagnosed with Fibromyalgia.

• The Misconception: Fibromyalgia is often treated as a mystery pain condition.
• The Reality: For many, that “Fibromyalgia” is actually undiagnosed hEDS/HSD. The loose joints are causing the irritation, and the faulty nervous system (P&S dysfunction) is magnifying that pain signals.

If you have been told you have Fibromyalgia but also have flexible joints and dizziness, it might be time to look at your “wiring” instead of just treating the pain.

Where to Seek Expert Care?

It is important to seek out a clinician with expertise in EDS to make an accurate diagnosis and create a treatment plan. One of the nation’s leading dysautonomia treatment center is Franklin Cardiovascular Associates, under the direction of Nicholas DePace, MD, FACC. They are located in Sicklerville, New Jersey. franklincardiovascular.com, (856) 589-6034

About the Author

Nicholas L. DePace, MD, FACC is a board-certified cardiologist and Medical Director of Franklin Cardiovascular Associates. A graduate of the Mount Sinai School of Medicine, Dr. DePace has decades of clinical, academic, and research experience and has held faculty appointments as a Clinical Professor of Medicine, becoming one of the youngest full professors in Philadelphia at the time of his appointment.

Dr. DePace specializes in the diagnosis and treatment of autonomic nervous system dysfunction (dysautonomia), including POTS, autonomic dysfunction associated with Ehlers-Danlos syndrome (EDS), chronic fatigue, and anxiety-like conditions that are frequently misdiagnosed. He is nationally recognized for his work on parasympathetic and sympathetic (P&S) nervous system imbalance, a core mechanism underlying many complex chronic disorders.

In addition to treating patients from across the United States, Dr. DePace is a prolific clinical researcher and author of multiple nationally distributed medical textbooks published by Springer and W.W. Norton, focusing on autonomic dysfunction, mitochondrial disorders, cardiovascular disease, and mind–body medicine.

👉 View Dr. DePace’s professional profile
👉 View medical books by Dr. DePace