Medication
There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications. Your doctor may prescribe drugs to help you control: Pain.
Procedures
Help the body rapidly eliminate the known microbial issues associated with the activation and worsening of Ehlers-Danlos using our proprietary technology Induced Native Phage Therapy (INPT) Optimize all of the organ circuits, metabolic pathways, detoxification, , bioenergetic regulation…
Therapy
Medication can be a crucial part of a pain management strategy for many people with Ehlers-Danlos syndrome. For daily management, people may take over-the-counter pain reliever medications, such as acetaminophen (Tylenol) or ibuprofen (Advil, Motrin).
Self-care
Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. Your physical therapist might also recommend specific braces to help prevent joint dislocations.
Nutrition
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Is there a cure for Ehlers Danlos syndrome?
How can INPT help Ehlers Danlos?
What is the best pain medication for Ehlers Danlos?
How do physical therapists treat Ehlers-Danlos syndrome?
What triggers Ehlers-Danlos?
What causes Ehlers-Danlos syndrome? A defect in collagen (proteins that add flexibility and strength to connective tissue) causes Ehlers-Danlos syndrome. People with the disorder have a faulty gene that leads to weak collagen or not enough normal collagen in their tissues.
How long do Ehlers-Danlos patients live?
Patients with the classical and hypermobility forms of Ehlers-Danlos syndrome have a normal life expectancy. About 80% of patients with vascular Ehlers-Danlos syndrome will experience a major health event by age 40 and the life expectancy is shortened, with an average age of death of 48 years.
Can you live a normal life with Ehlers-Danlos?
General: EDS affected persons can live like normal people; however, they may feel some constraints in their mobility. A person affected with vascular EDS is prone to serious fatal complications like tearing open of a main blood vessel or organ.
Is Ehlers-Danlos a serious illness?
Vascular EDS (vEDS) is a rare type of EDS and is often considered to be the most serious. It affects the blood vessels and internal organs, which can cause them to split open and lead to life-threatening bleeding.
Does Ehlers-Danlos syndrome get worse with age?
Many of the problems associated with EDS are progressive, meaning that they get worse over time.
Is Ehlers-Danlos a disability?
Applying for Social Security Disability with Ehlers-Danlos Syndrome. Like many rare genetic conditions, there is no Blue Book listing for Ehlers-Danlos. However, you may still qualify for benefits if you can match a listing associated with your particular symptoms or impairments.
Is EDS worse than arthritis?
Conclusion: EDS-HT is associated with a consistent burden of disease, similar to that of FM and worse than that of RA, as well as a broad impact of chronic pain on daily life, which needs to be addressed in the health care system.
What does EDS pain feel like?
I was asked recently to describe what my body feels with EDS. I described the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises. This is my daily experience even with the aid of pain meds.
Does Ehlers-Danlos shorten life expectancy?
The long-term outlook (prognosis) for people with vascular Ehlers-Danlos syndrome is generally poor. It is often associated with a shortened lifespan. Among affected people diagnosed as the result of a complication, 25% have experienced a significant medical complication by age 20 and more than 80% by age 40.
Does Ehlers-Danlos affect the brain?
Because EDS is a connective-tissue disorder, it is not commonly associated with the brain or the nervous system. However, there is evidence that some types of EDS can affect the brain. Studies have suggested that patients with EDS might be susceptible to damage to brain cells after even a mild traumatic head injury.
At what age is Ehlers-Danlos syndrome diagnosed?
It is usually diagnosed before the age of 2 years. Fragility, bruising and sagging of the skin are severe but, surprisingly, the skin heals well. Like the other rare types, in order to inherit it you need to inherit one faulty gene from EACH of your parents.
Do collagen supplements help Ehlers-Danlos?
Bottom Line: No established research or clinical experience has proven that collagen supplementation is helpful for persons with EDS! Theoretically, a diet adequate in glycine, proline, lysine, and vitamin C (or supplementation) would support collagen biosynthesis.
How do doctors diagnose Ehlers Danlos syndrome?
How do doctors diagnose Ehlers-Danlos syndrome? Doctors use your family history and several tests to diagnose Ehlers-Danlos syndrome. Your diagnosis may involve: Genetic testing: The most common way to identify the condition is to look for a faulty gene.
What is Ehlers Danlos syndrome?
What is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome is a group of conditions that affect the connective tissues in the body. These tissues include cartilage, bone, fat and blood. They support organs and other tissues throughout the body.
What are the symptoms of Ehlers Danlos?
Its symptoms include: Hypermobile (overly flexible) joints. Unstable joints. Soft skin that is thinner and stretches more than normal. Excessive bruising.
How many people have Ehlers Danlos?
Ehlers-Danlos syndrome can be genetic, meaning it is passed down through family members. An estimated 1 in 5,000-20,000 people have the most common type of Ehlers-Danlos syndrome.
Can Ehlers Danlos cause a stroke?
When this happens, it can lead to dangerous internal bleeding and stroke. People with these types of Ehlers-Danlos syndrome also have a higher risk of organ rupture.
Does Ehlers Danlos syndrome affect life expectancy?
Most forms of the condition do not affect life expectancy.
How to treat Ehlers Danlos syndrome?
Treatment for Ehlers-Danlos Syndrome will depend upon the severity of the condition and its complications, as well as on the health and age of the patient. Surgery can improve quality of life, and a medical team will recommend surgery for life-altering EDS issues not addressed by conservative treatment. Minimally invasive surgical techniques are ...
What is the treatment for EDS?
Treatment and management are focused on preventing serious complications and pain relief. Conservative treatment, such as physical therapy and RICE (rest, ice, compression, elevation) is preferable to surgery since EDS can lead to less-predictable healing and excessive bleeding.
What is the treatment for lumbar numbness?
Issues affecting the lumbar (lower) spine, such as pressure or swelling of the nerves, may be treated with spinal fusion or a laminectomy to address weakness or numbness, loss of bladder/bowel control, or sexual dysfunction. Surgical intervention is also often used to treat problems in the cervical spine that EDS can cause, ...
What is the procedure to remove nerve roots?
Laminectomy: A laminectomy is performed to relieve pressure on the nerve roots. This surgical procedure involves removing part of the vertebra bone called the lamina in order to access the disk. This minimally invasive technique requires a small incision in the back, where the muscles are pushed aside rather than cut.
Typical Symptoms (Generally of all types)
The symptoms of EDS might vary depending on the type and severity of the disease. A patient may suffer some of the following general symptoms as a result of their condition:
Causes and Risk Factors
Depending on the patient’s EDS, a genetic mutation might develop in one of eight distinct genes responsible for the condition. According to research, people with EDS have a 50 percent risk of passing the disease on to their offspring.
Diagnosis
The diagnosis of EDS is generally made based on the patient’s symptoms, family medical history, and genetic tests. In addition, the physician may do a physical examination to establish whether the patient is experiencing any other symptoms linked with EDS.
General EDS Treatment
Because EDS is a hereditary disease, there is currently no treatment available. Reduced stress on the aorta and other arteries will be the primary focus of treatment, as will the management of skeletal and joint problems and the relief of any pain connected with them.
Lifestyle and Home Remedies
It is necessary to take precautions to avoid Ehlers-Danlos syndrome from becoming a problem. Some essential steps you should take to keep yourself safe are listed below.
Treatments to Keep Bone Density
Supplementing with calcium and vitamin D can aid in the development of stronger bones. Weight-bearing activities also assist in the maintenance of mineral bone density and muscle tone, in addition to other benefits. A physiotherapist can advise patients on the safe and appropriate exercises for them to perform.
Treatments for Gastrointestinal Issues
Propon-pump inhibitors (PPIs) and H2-blockers are medications that can be used to treat gastroenteritis (inflammation of the lining of the stomach) and gastroesophageal reflux disease (GERD).
What is the Ehlers Danlos syndrome?
Ehlers-Danlos syndrome is a type of connective tissue condition affecting the bones, blood vessels, skin, and a variety of other tissues and organs. The complications and symptoms range from mild to life-threatening. There are multiple types of Ehlers-Danlos syndrome, but most involve hypermobile joints. With the classic type, patients may also have fragile and stretchy skin. The vascular type is often characterized by certain facial features, such as a thin upper lip, prominent eyes, thin nose, and small earlobes. With this type, the risk of arterial rupture is possible since these vessels can be weakened. The intestinal and uterine walls are also at risk of weakening and rupture. Ehlers-Danlos syndrome is incurable, but there are treatment options to help patients manage the disorder.
Why do you need hardware for Ehlers Danlos?
Hardware may be placed to add stability to especially unstable joints. If damage to certain joints is very severe, doctors might discuss total joint replacement with their patients. Patients with the vascular type of Ehlers-Danlos syndrome who experience a blood vessel rupture typically require surgery to repair it, ...
Can you use hydrocodone for Ehlers Danlos?
These might include tramadol or opioid drugs, such as hydrocodone or oxycodone. These are typically only used for a short while until the heightened pain alleviates, at which point they can be downgraded to over-the-counter pain relievers. Continue reading for the next method of treating Ehlers-Danlos syndrome.
Is Ehlers Danlos syndrome incurable?
The intestinal and uterine walls are also at risk of weakening and rupture. Ehlers-Danlos syndrome is incurable, but there are treatment options to help patients manage the disorder.
What is Ehlers Danlos Syndrome?
What Is Ehlers-Danlos Syndrome? Ehlers-Danlos syndrome (EDS) is a disease that weakens the connective tissues of your body. These are things like tendons and ligaments that hold parts of your body together. EDS can make your joints loose and your skin thin and easily bruised.
How to help a child with EDS?
Stronger muscles can make you less likely to dislocate a joint. Helpful exercises can include walking, low-impact aerobics, swimming, or bicycling. Physical therapy is especially important for children with EDS. Braces or other assistive devices, like a wheelchair or scooter, to make getting around easier.
What is the most common form of EDS?
The most common form of EDS makes your joints bend farther than they should. That makes them more likely to be dislocated or sprained. Up to 1 person in 10,000 may have this form of the illness called the hypermobility type. In the classical type of EDS, your skin is smooth, extremely stretchy, and fragile.
What is the EDS skin type?
In the classical type of EDS, your skin is smooth, extremely stretchy, and fragile. People with this type often have scars on the skin over their knees and elbows and bruise easily. They also are likely to have sprains, dislocations, or conditions like flat feet as well as problems with a heart valve or artery.
What kind of doctor treats EDS?
You might need to see several kinds of doctors, including: An orthopedist, who specializes in joint and skeleton problems. A dermatologist, who treats skin conditions.
What is the rarest type of EDS?
With only about a dozen cases reported, the rarest type of EDS is called dermatosparaxis. People with this have extremely soft, doughy skin that is easily bruised and scarred. They also are more likely to have hernias. Causes. EDS happens when your body doesn't make a protein called collagen in the right way.
How to help Ehlers Danlos?
Share on Pinterest. Swimming can help people manage the symptoms of Ehlers-Danlos syndrome. People with Ehlers-Danlos syndrome may be able to manage their symptoms by: avoiding contact sports, weightlifting, and other activities that put too much strain on the joints or increase the risk of injury.
What is the best medication for Ehlers Danlos syndrome?
For daily management, people may take over-the-counter pain reliever medications, such as acetaminophen (Tylenol) or ibuprofen (Advil, Motrin).
What is Ehlers Danlos syndrome?
Outlook. Ehlers-Danlos syndrome is a group of genetic disorders that affect the body’s connective tissues, including those in the joints, skin, and blood vessels. There are several different types of Ehlers-Danlos syndrome. Collectively, these affect as many as 1 in 5,000 people globally.
How many genes can cause Ehlers Danlos syndrome?
Ehlers-Danlos syndrome is a genetic disorder, which means that one or more genetic abnormalities are responsible for the symptoms. Mutations in at least 19 genes can result in someone being born with Ehlers-Danlos syndrome.
What is a hypermobile EDS?
Hypermobile EDS (hEDS) Hypermobile EDS (hEDS) is the most common type, occurring in 1 in 5,000 to 20,000 people worldwide. There is no genetic test available for hEDS, so a doctor will diagnose it based on a person’s symptoms. It causes skin and joint issues, fatigue, mood problems, and issues with digestion.
Does Ehlers Danlos syndrome affect life expectancy?
Aside from the vascular type, most types of Ehlers-Danlos syndrome rarely reduce life expectancy.
Is Ehlers Danlos rare?
However, some forms of the syndrome are very rare and affect only a few individuals worldwide. In this article, we look at the symptoms and causes of Ehlers-Danlos syndrome, as well as the treatment options and the outlook for a person with one of these conditions.
How to treat Ehlers Danlos syndrome?
A Ten-Point Treatment Plan for those with Ehlers-Danlos Syndrome 1 Facilitate the restoration of copper and iron utilization through identifying and eliminating interferences in the loading of copper onto the copper-transport molecule, ceruloplasmin. 2 Correct metabolic pathways of copper-dependent enzymes, the deficiency of which directly leads to the symptoms of all forms of EDS. 3 Facilitate the restoration of biophoton regulation of metabolic processes. 4 Release global fascia restrictions. 5 Eliminate accumulated environmental and endogenous toxins, such as toxic accumulations of iron in the tissues and glyphosate. 6 Assess and facilitate the body’s correction of metabolic processes, such as Heme metabolism, and mast cell/histamine/proinflammatory issues. 7 Optimize dietary issues, and gut microbiome imbalances.. 8 Eliminate EMF interference in genetic/epigenetic expression. 9 Synchronize brain-heart co-regulation of biological processes and correct brain-wave patterns. 10 Regenerate problem tissues using your own body’s stem cells.
What causes EDS?
EDS is caused by a generational predispositions and acquired metabolic disturbances, the symptoms of which are unique based on the totality of systemic problems, more than, but not excluding the possibility of a genetic, and most definitely the epigenetic component which can be changed.
What is the key issue in EDS?
A key issue in some forms of EDS arises from the liver. The liver is supposed to produce Activated-Ceruloplasmin, the key transporter of copper to the body. Copper is required to produce Lysyl Oxidase and many other key enzymes (See in next bulletpoint) associated with the various presentations of EDS.
What is the diet that blocks ceruloplasmin?
Histamine blocks the production of ceruloplasmin, therefore a low histamine diet is necessary until the body’s functional biochemistry is repaired. Dietary sources of iron, such as iron-enriched breads, beef, and iron supplements must be stopped.
Is EDS an iron deficiency?
Remember, if you are anemic and have low iron levels, in EDS it is most often not truly an iron deficiency, it is a iron utilization problem, since all the iron you are taking is rapidly and inappropriately getting stored in the cells and tissues, due to the loss of the normal iron-regulating nature of ceruloplasmin.
Is there copper in EDS?
There is often a lack of bio-available copper in EDS. Remember ceruloplasmin is a transporter of copper, without the exact number of atoms of copper being loaded on each ceruloplasmin molecule, it will not activate or be able to deliver the copper that is necessary to manufacture the enzymes listed above.
Does Tenascin X cause EDS?
Tenascin-x is not associated with copper or ceruloplasmin, but it is believed to cause many of the same symptoms of classical EDS, however skin healing is normal. Although not the only issue needed to be addressed, it is important to balance the ratio of copper to iron in the muscles, ligaments, and organs.
What is the Ehlers Danlos syndrome?
The Ehlers-Danlos syndromes are a group of conditions that affect the stretchiness and strength of supporting tissues in the body, including skin, joints, blood vessels and internal organs. They vary in their impact from very mild through to very severe. Ehlers-Danlos Syndrome. In this article.
How many people have Classical Ehlers Danlos syndrome?
Classical Ehlers-Danlos syndrome. Classical EDS (cEDS) affects 1 in 20,000-50,000 people. It is autosomal dominant genetic condition, which means that if you inherit one affected gene (one from either parent will do) then you will have the condition.
What is the most common form of EDS?
The genes which cause most types of EDS have been clearly identified and can be tested for. However, the most common form of EDS, hypermobility EDS (hEDS), is an exception to this, as the gene which causes it has not yet been identified.
What is the rarest type of EDS?
Arthrochalasia Ehlers-Danlos syndrome. Arthrochalasia EDS (aEDS) is a very rare, severe type of EDS in which the joints are very, very much looser than they should be. Like the other rare types, in order to inherit it you need to inherit one faulty gene from EACH of your parents.
Why do people with EDS put their joints back in place?
Dislocations of joints may easily occur, and people with EDS can often put their own joints back into place because the tissues are so stretchy. Joint pains are also common.
Can EDS cause joint dislocation?
They tend to be more floppy than usual. Some rare types of EDS can affect growth and cause early joint dislocations.
Can EDS be life threatening?
Whilst the symptoms of EDS may be mild and undiagnosed, for some people with EDS, symptoms can be severe, life-changing, and even life-threatening. Most forms of EDS affect the skin (which can be unusually stretchy and, sometimes, fragile) and the joints which can be 'double-jointed' (hypermobile).
Diagnosis
Treatment
Clinical Trials
Coping and Support
Specialist to consult
Preparing For Your Appointment
- Extremely loose joints, fragile or stretchy skin, and a family history of Ehlers-Danlos syndrome are often enough to make a diagnosis. Genetic tests on a sample of your blood can confirm the diagnosis in rarer forms of Ehlers-Danlos syndrome and help rule out other problems. For hyper…