The Immune System and hEDS
See separate Information page for Mast Cell Activation Syndrome
Most people think of hEDS as a connective tissue disorder—but it can also impact the immune system. That means some people with hEDS may get sick more often or feel run down without knowing why. This happens because the body’s structure—the “scaffolding” that supports cells—is weaker in hEDS. That includes parts of the immune system.
Immune Issues in hEDS
Frequent Infections
Some people with hEDS don’t make enough protective proteins called antibodies, which help the body fight germs. This can lead to
More than four sinus, lung, or ear infections per year
Stomach bugs that hang on for a long time
Feeling tired a lot, especially after being sick
Treatment: If tests show low antibody levels, doctors may recommend antibody replacement therapy—either through monthly infusions at a clinic or small weekly injections at home. The goal is to help your body fight infections better.
Problems With Another Germ-Fighting System (Complement Proteins)
Another part of the immune system uses a chain reaction (like falling dominos) to kill bacteria. Some people with hEDS are missing pieces of this system, which makes it harder to fight serious infections like meningitis or may lead to strange rashes.
Testing: Blood tests can check if these protective proteins are missing.
Autoimmune Conditions
In some people with hEDS, the immune system mistakenly attacks the body’s own tissues, especially the joints or skin. This is called an autoimmune response.
Signs may include
Swollen or painful joints
Rashes
Extreme fatigue
If you have these symptoms, your doctor may do blood tests to check for autoimmune diseases like lupus or rheumatoid arthritis.
Why Does hEDS Affect the Immune System?
Weak Collagen = Confused Signals
In hEDS, the body’s connective tissue is too loose or stretchy. This can confuse the immune system and cause
A low-level, ongoing inflammation throughout the body
Mixed-up signals that send immune cells to the wrong places or make them overreact
Fascia May Play a Role
In hEDS, fascia can be thicker or more inflamed. This may keep the immune system constantly on alert, adding to overall inflammation.
Other Things That Can Make Immunity Worse
Even if hEDS causes a weak immune system, other issues can add to the problem. These include
Trigger | How It Hurts the Immune System | What Helps |
Ongoing pain | Keeps the body in stress mode | Pain management, physical therapy, pacing |
Poor sleep | Weakens the body’s ability to make new antibodies | Improve sleep habits, treat apnea or leg cramps |
Little movement | Slows down the body’s ability to clear out germs | Gentle exercise like swimming or stretching |
Long-term use of NSAIDs or opioids | Weakens the gut or lowers key immune cells | Rotate meds, add gut-friendly foods |
Taking many medications (older adults) | Can interfere with immune cell function | Review meds yearly with a pharmacist or doctor |
Age-specific Considerations
Kids and teens: It’s normal to catch colds often, so doctors look for more serious infections before doing immune testing.
Adults (20–50): Hormonal changes (like pregnancy or perimenopause) can trigger immune issues.
Older adults (60+): The immune system naturally weakens with age, so vaccines become even more important.
Diagnostic Roadmap
If your doctor thinks your immune system might be struggling, they may recommend
Keeping an infection log – Track how often and how long you’re sick
Blood tests – To check antibody levels and how well vaccines work
Autoimmune screening – If you have joint swelling, rashes, or extreme fatigue
Imaging – CT scans of sinuses or lungs if infections keep coming back
Current and Emerging Treatments
Antibody Replacement (IVIG or subcutaneous injections) Gives your body the antibodies it can’t make on its own.
Vaccines Annual flu shot, COVID boosters, shingles vaccine at 50+, pneumonia vaccine if needed.
Diet and Lifestyle
Keep vitamin D in a healthy range (get tested)
Eat fruits and vegetables for immune support
Get regular, gentle movement
In Development (Still Being Studied) Some early research is exploring blood tests to detect signs of hEDS-related inflammation and medications that may reduce it, but these are not yet widely available.
How Common Are Immune Issues in hEDS?
Not everyone with hEDS will have immune-related problems, but they appear to be more common than in the general population. In one large clinic study, nearly 1 in 5 people with hEDS-like hypermobility had measurable antibody deficiencies. Autoimmune conditions such as rheumatoid-like arthritis or lupus may also show up more frequently in people with hEDS. However, not all immune-related symptoms in hEDS are fully understood. Some findings—like abnormal immune cell activity in the connective tissues or overstimulation from fascia—are still being researched. While low antibodies and autoimmune overlap are well-documented, other ideas, such as fascia acting like an immune trigger, are still emerging and not yet fully proven.
Summary
People with hEDS may be more likely to get infections, feel tired, or develop autoimmune conditions because their immune systems don’t always work as well as they should. This may be caused by the same weak connective tissue that affects their joints and skin. Some of the problems—like low antibody levels or autoimmune symptoms—are well known. Others are still being studied. Most of these issues can be tested with simple blood work, and treatments like antibody infusions, vaccines, and lifestyle changes can help improve health and reduce the incidence of sickness.
