Click Here to Download this Blog Post – The Long Road to Answers: Why You Were Misdiagnosed for Years (Part 15)

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 and finally have a diagnosis of hEDS or HSD, you might feel a mix of relief and anger.

For many patients, the diagnosis comes decades too late. You may have struggled through grade school, high school, and your career feeling like you were fighting a losing battle against your own body. You dealt with pain, extreme fatigue, brain fog, and joints that slipped out of place (subluxations)—all while being told you were “fine.”

The “It’s All in Your Head” Trap

The most common story in the EDS community is the patient who sees a dozen different doctors and is eventually labeled with “Anxiety” or a “Functional Disorder.”

Why does this happen? It’s not necessarily because the doctors are bad; it’s because the disease is a master of disguise.

The “Too Many Symptoms” Problem Medicine is often divided into specialties. You see a urologist for bladder issues, a gastroenterologist for stomach pain, a neurologist for headaches, and an optometrist for eye trouble.

• The eye doctor looks at your eyes and sees nothing wrong structurally.
• The stomach doctor does a scope and sees nothing wrong structurally.

Because these doctors often don’t talk to each other, nobody sees the big picture. They see a patient with a laundry list of complaints that don’t seem connected. When a doctor can’t find a physical cause for so many different problems, they often conclude the problem must be psychiatric.

Connecting the Dots

The reality is that these “unrelated” symptoms are actually all the same problem. Your connective tissue is everywhere—in your eyes, your gut, your bladder, and your nerves. When the tissue is faulty, everything malfunctions.

The Chicken or the Egg?

It is true that many hEDS/HSD patients suffer from anxiety and depression. However, it is crucial to understand the order of events:

• The Misconception: You are in pain and tired because you are anxious or depressed.
• The Reality: You are anxious and depressed because you are in chronic pain, your body is unreliable, and you haven’t been believed for years.

The mental health struggles are secondary. They are a natural human reaction to living with a debilitating, undiagnosed illness. You aren’t crazy—you’ve just been trying to survive without the right manual for your body.

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 centers 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 Overactive Guard Dog: Understanding Mast Cell Activation Syndrome (MCAS) (Part 14)

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

• If you have hEDS or HSD, you might feel like you are allergic to the world. You aren’t just imagining it. Many people with connective tissue disorders also battle an immune system issue called Mast Cell Activation Syndrome (MCAS).

  What are Mast Cells?

  Think of mast cells as your body’s “guard dogs.” They live in almost every tissue and protect you from invaders like bacteria and viruses. When they spot a threat, the Sympathetic Nervous System (the gas pedal) tells them to attack by releasing chemicals like histamine.

  When the Guard Dog Goes Rogue

  In a healthy body, the Parasympathetic Nervous System (the brake pedal) keeps these cells calm. But because hEDS/HSD causes these nerves to glitch, the “brake” fails.

  The result? Your mast cells become confused. They start barking and biting at things that aren’t dangerous—like foods, smells, or temperature changes. This overreaction is MCAS.

  The Symptoms

  Because mast cells are everywhere, the symptoms can happen anywhere. It’s not just sneezing; it often looks like:

  • Skin:Hives, flushing, itching.
  • Gut:Nausea, vomiting, diarrhea (often misdiagnosed as IBS).
  • Heart:Racing heart, low blood pressure, fainting.
  • Lungs:Wheezing or throat tightness.
  • Brain:Brain fog and headaches.

  How is it Diagnosed?

  Doctors look for the “Rule of Three”:

  1. Clinical Signs:Symptoms in two or more body systems (e.g., skin and stomach).
  2. Lab Tests:High levels of specific chemicals (like Tryptase or histamine) in blood or urine. Note: You might also be tested for a genetic trait called HaT (Hereditary Alpha-Tryptasemia), which is common in EDS patients.
  3. Response to Treatment:You feel better when taking mast cell medications.

  The “Two-Door” Treatment Strategy

  Treating MCAS isn’t just about taking an allergy pill. Histamine has different ways of entering your cells, like different doors. To stop the reaction, you often need to lock both doors:

  • Block Door 1 (H1 Blockers):Common allergy meds like Zyrtec or Xyzal.
  • Block Door 2 (H2 Blockers):Meds often used for acid reflux, like Pepcid.

  If you only block one, the body just uses the other door, and you don’t get relief.

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 centers 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 “Why” Behind The Pain (Part 13)

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

Many people spend years—sometimes decades—bouncing between doctors, trying to explain two persistent problems: constant dizziness and chronic pain.

If you have been diagnosed with hEDS (Hypermobile Ehlers-Danlos Syndrome) or HSD (Hypermobility Spectrum Disorder), these aren’t just random bad luck. There is a specific chain of command causing your symptoms, and understanding it is the first step to managing it.

The Chain Reaction: From Tissue to Nerves to Pain

It is helpful to think of your condition as a domino effect. Here is how the medical literature explains the sequence:

1. The Root Cause: You have hEDS or HSD. This means your connective tissue (the glue holding your body together) is built differently.
2. The Middleman: Because your tissue is “stretchy” or loose, it interferes with your P&S (Parasympathetic and Sympathetic) Nerves. As we discussed in the previous post, this causes your body’s “autopilot” to glitch.
3. The Symptom: This nerve dysfunction leads to Orthostatic Dysfunction (dizziness and fainting when standing). Crucially, these nerve glitches also amplify pain. The pain isn’t just in your joints; your nervous system is turning the volume knob up, making everything hurt more.

What Doctors Should See: The Physical Clues

When a doctor looks at your history and performs a physical exam, they shouldn’t just be looking at your heart rate. They should be looking at you.

In patients with these disorders, the body tells a story through four main physical signs:

• Super-Stretchy Skin (Hyperextensibility): Your skin might pull away from your body much further than the average person’s, almost like elastic.
• Over-Flexible Joints (Hypermobility): You can bend your fingers, elbows, or knees past the “normal” stopping point.
• Fragile Tissue: Your skin might tear easily or heal poorly.
• Easy Bruising: You might find mysterious bruises without remembering how you got them, because the blood vessels under the skin are fragile.

A Critical Warning: The “Vascular” Variety

While hEDS is the most common form, there is a rarer, more dangerous cousin called Vascular EDS (vEDS).

The medical community often misses this diagnosis until it is too late—usually after a major, life-threatening event. Because vEDS affects the blood vessels and organs directly, it requires different attention.

The Red Flags for Vascular EDS If you or a family member have a history of the following, especially if it happened before age 40, it is vital to check for vEDS:

• Organ Rupture: A history of intestines or other organs tearing or rupturing unexpectedly.
• Aneurysms: Bulges in blood vessels.
• Major Bleeding: Bleeding that is difficult to stop or happens spontaneously.

The Takeaway: If you have easy bruising combined with a family history of sudden organ trouble or aneurysms at a young age, do not wait. This specific history is the loudest alarm bell for doctors to investigate Vascular EDS immediately.

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 centers 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 Body’s Overactive Security System: Understanding Mast Cell Activation Syndrome (MCAS) (Part 11)

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

The Body’s Overactive Security System: Understanding Mast Cell Activation Syndrome (MCAS)

If you have been diagnosed with a connective tissue disorder like hEDS or HSD, you might feel like your symptoms go far beyond just “loose joints.” You might struggle with random flushing, stomach issues, brain fog, or reactions to foods that seem to change day by day.

The culprit might not be your joints, but your Mast Cells.

In many of our patients, the immune system and the nervous system are engaged in a chaotic dance. This leads to a condition called Mast Cell Activation Syndrome (MCAS). Here is how it works and why it happens.

What Are Mast Cells? The “First Responders”

Think of Mast Cells as the security guards of your body. They are immune cells born in your bone marrow that travel to almost every tissue in your body. They sit and wait for trouble—like bacteria, viruses, or an injury.

When they spot a threat, they “degranulate.” This means they explode open and release a cocktail of chemicals, including histamine, heparin, and other protectors. This process causes inflammation to help you heal and changes your blood flow to get help to the injury site.

When the Guards Go Rogue: What is MCAS?

In a healthy person, mast cells only react to real threats. In patients with MCAS, these cells become overactive and confused. They start viewing harmless things—like certain foods, smells, or stress—as dangerous invaders.

When they overreact, they dump massive amounts of chemicals into your system, causing a wide range of symptoms:

• Skin: Flushing, hives, itching.
• Breathing: Wheezing, stuffy nose, throat tightness.
• Heart: Racing heart (tachycardia), low blood pressure, fainting.
• Stomach: Nausea, vomiting, diarrhea, cramping.
• Head: Brain fog, headaches, migraines.

The Missing Link: The Nervous System Connection

You might wonder: Why are my immune cells freaking out?

The answer often lies in your P&S Nervous System (Parasympathetic and Sympathetic).

1. The Manager (Parasympathetic): This system is supposed to control and coordinate your immune system.
2. The Trigger (Sympathetic): This system tells the mast cells to release their chemicals.

In patients with hEDS/HSD, the P&S system is already dysfunctional. If the “Manager” isn’t doing its job and the “Trigger” is too sensitive, your mast cells end up releasing histamine constantly. This worsens your dizziness (dysautonomia) and pain.

How Do We Diagnose It? The “Rule of Three”

Diagnosing MCAS can be tricky because symptoms come and go. We look for three specific criteria:

1. Clinical Symptoms: You must have symptoms in two or more body systems (e.g., skin and stomach) that happen repeatedly.
2. Lab Tests: We look for elevated levels of specific chemicals (like Tryptase or Histamine) in your blood or urine. Note: These can sometimes show up normal if you aren’t having an active flare-up or are already taking meds.
3. Response to Treatment: If we treat you with mast cell stabilizers or antihistamines and you get better, that is a strong sign you have MCAS.

The Genetic Clue: HaT

Some patients have a specific genetic trait called Hereditary Alpha-Tryptasemia (HaT). This is a duplication of a gene that causes high levels of Tryptase. It is commonly linked to hEDS, MCAS, and autonomic dysfunction. A simple DNA swab can test for this.

Treatment: Locking Both Doors

The most common treatment involves blocking the histamine that is making you miserable. However, you can’t just take one type of allergy pill.

Your body has different “doors” (receptors) that lets histamine in. To get relief, you usually need to block both:

• H1 Blockers: These are your standard allergy meds (like Zyrtec, Xyzal, or Benadryl).
• H2 Blockers: These are often sold as heartburn meds (like Pepcid).

If you only block one, the histamine just uses the other door!

The Bottom Line

MCAS is essentially an “allergy” to things you aren’t actually allergic to, driven by a nervous system that has lost its rhythm. It explains why so many hEDS patients also have IBS, food sensitivities, and random allergic reactions.

By calming the nervous system and stabilizing these cells, we can often turn down the volume on these symptoms, helping you feel more in control of your body.

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 centers 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