Zoom Skeletspieren en gewrichten ED | Ehlers Danlos syndroom
EDS is de afkorting van Ehlers-Danlos Syndroom. Het is een verzameling bindweefselziekten die ervoor zorgen dat de gewrichten van het lichaam hypermobiel worden en pijn veroorzaken. Afhankelijk van het type EDS dat u heeft, kunnen de symptomen verschillen. De ziekte kan niet worden behandeld, maar de symptomen kunnen vaak worden verlicht.
Wat is EDS?
EDS is een groep erfelijke ziekten die ervoor zorgen dat het bindweefsel van het lichaam op verschillende manieren verandert. Bindweefsel is een ondersteunend weefsel dat door het hele lichaam wordt aangetroffen, in spieren, pezen, kraakbeen, ligamenten, huid, bloedvaten, tandvlees, hoornvlies, buikholte, darmwanden en rond de inwendige organen. Het is vooral belangrijk voor het stabiliseren van gewrichten en het aanpassen van hun mobiliteit. De veranderingen die optreden in het bindweefsel van het lichaam als gevolg van EDS zorgen ervoor dat de gewrichten hypermobiel worden. De symptomen kunnen sterk verschillen tussen verschillende individuen, afhankelijk van verschillen in de gevoeligheid en elasticiteit van het bindweefsel.
Verschillende soorten EDS
Er zijn dertien verschillende soorten EDS. De meest voorkomende wordt hypermobiele EDS of hEDS genoemd. Hypermobiliteitsspectrumstoornis (HSD) is een bredere diagnose met vergelijkbare symptomen. Klassieke EDS (cEDS) veroorzaakt naast hypermobiele gewrichten duidelijke huidproblemen. Andere soorten EDS zijn vernoemd naar verschillende kenmerkende symptomen. Voorbeelden zijn vasculair EDS dat de bloedvaten aantast, hartklep EDS dat het hart aantast, parodontaal EDS dat het tandvlees aantast en Bros hoornvlies EDS dat het hoornvlies aantast.
Oorzaak van EDS
EDS is een erfelijke ziekte. Hypermobiele gewrichten komen vaker voor bij vrouwen dan bij mannen, wat waarschijnlijk te wijten is aan de verspreiding van geslachtshormonen. Testosteron, het dominante geslachtshormoon bij mannen, bouwt spiermassa op. Het helpt de gewrichten van het lichaam te stabiliseren en eventuele symptomen van hypermobiele gewrichten te verminderen.
Symptomen van EDS
De symptomen van EDS zijn afhankelijk van het type EDS dat u heeft en kunnen ook sterk verschillen van persoon tot persoon. Sommigen hebben milde en anderen zeer ernstige problemen. Wat alle soorten EDS gemeen hebben, zijn hypermobiele gewrichten. Veel voorkomende symptomen van EDS zijn Het feit dat de wanden van de bloedvaten kwetsbaar zijn betekent dat de bloedvaten gemakkelijk breken waardoor je inwendige bloedingen in het lichaam krijgt. Hierdoor kun je veel en grote blauwe plekken krijgen. Als grote bloedvaten scheuren, kan dit een plotselinge dood veroorzaken. Vrouwelijke geslachtshormonen beïnvloeden de elasticiteit van het bindweefsel van het lichaam en veel vrouwen ervaren veranderingen in hun symptomen, zowel wanneer ze voor het eerst ongesteld worden, tijdens elke menstruatiecyclus en tijdens de menopauze. De typische symptomen van hEDS zijn Andere veel voorkomende symptomen zijn Minder voorkomende symptomen van hEDS zijn bijvoorbeeld Als u hEDS heeft, komt het ook vaker voor dat u dat heeftADHD,autisme spectrum stoornis,depressieofspanning. U kunt ook een verminderd effect van lokale anesthetica ervaren. Naast de hierboven genoemde symptomen van hEDS, lopen vrouwen met hEDS een groter risico opverzakkingEnbeslaanonderde zwangerschap, dan andere vrouwen. Het is daarom bijzonder belangrijk dat zwangere vrouwen met hEDS regelmatig bewegen en hun activiteiten en werk aanpassen aan hun symptomen. Vrouwen met hEDS hebben ook heel vaak onregelmatige, hevige en pijnlijke menstruatiebloedingen en velen ervaren pijn tijdens geslachtsgemeenschap.Symptomen van hEDS – hypermobiele EDS
Symptomen bij vrouwen met hEDS
Symptomen bij kinderen met hEDS
Het is moeilijk om kinderen met hEDS te diagnosticeren, omdat kinderen over het algemeen meer hyperactief zijn dan volwassenen. Symptomen die typerend zijn voor kinderen met hEDS zijn bijvoorbeeld
- beweegbare vingergewrichten
- terugkerende pijn in de onderbenen
- verminderd fysiek uithoudingsvermogen
- vermoeidheid
- verminderd concentratievermogen
- rusteloosheid.
De pijn in de onderbenen kan vaak verkeerd geïnterpreteerd worden als groeipijn. Het is gebruikelijk om bovenstaande symptomen op te merken
- dat het kind moeite heeft om mee te komen op school
- dat het moeilijk is voor het kind om met de hand te schrijven
- dat het kind snel moe wordt tijdens langere wandelingen en sportactiviteiten.
Kinderen met hEDS kunnen ook gemakkelijk blauwe plekken krijgen. Sommige kinderen krijgenconstipatieen eetstoornissen.
Wat kan ik zelf doen?
Er zijn dingen die u zelf kunt doen om het ongemak veroorzaakt door EDS te verlichten. U kunt ook contact opnemen met de National Association of Ehler-Danlos Syndrome voor ondersteuning en praten met anderen die zich in dezelfde situatie bevinden als u. De Ehler-Danlos Society is een internationale organisatie voor zowel u die EDS heeft als voor zorgverleners die patiënten met de ziekte behandelen.
Behandeling van EDS
Er is geen behandeling die EDS kan genezen, maar in de zorg kun je op verschillende manieren hulp krijgen om je klachten te verlichten en schade te voorkomen. Afhankelijk van uw problematiek kunt u door veel verschillende beroepsgroepen worden behandeld, zoals fysiotherapeut, ergotherapeut, trajectbegeleider, verpleegkundige, arts, psycholoog, tandarts en bijtfysioloog. Deze behandeling kan onder andere bestaan uit:
Wanneer moet ik zorg zoeken?
Zoek hulp als u of uw kind problemen heeft die het dagelijks leven beïnvloeden.
Hoe kan Doktor.se mij helpen?
MetDoktor.seer werken veel ervaren verpleegkundigen, fysiotherapeuten, artsen en psychologen. Heeft u symptomen van EDS of heeft u vragen over de ziekte, dan kunt u contact met ons opnemen. Wij maken deel uit van de eerstelijnszorg en kunnen u helpen bij het verkrijgen van een eerste beoordeling. Indien nodig kunnen wij u dan doorverwijzen voor verder onderzoek en behandeling.
Vragen en antwoorden over EDS
Wat is EDS?
EDS is een ziekte, of een groep ziekten, die het bindweefsel van het lichaam op verschillende manieren aantast en hypermobiele gewrichten veroorzaakt.
Hoe wordt EDS behandeld?
EDS kan niet worden genezen, de behandeling is in plaats daarvan gericht op het verlichten van uw ongemak en het voorkomen van schade. De behandeling wordt aangepast aan uw klachten en kan bestaan uit medicijnen, fysiotherapie, ergonomische behandeling door een ergotherapeut, gesprekken met een psycholoog of hulpverlener en in sommige gevallen een operatie.
| Editor: | Ewa Lundborg - Doktor.se |
| Datum van het uitbrengen: | 2022-03-28 |
| Examinator: | Seika Lee, medisch directeur - Doktor.se |
| Laatst beoordeeld: | 2022-04-14 |
- Wat is EDS?
- Verschillende soorten EDS
- Oorzaak van EDS
- Symptomen van EDS
- Wat kan ik zelf doen?
- Behandeling van EDS
- Wanneer moet ik zorg zoeken?
- Hoe kan Doktor.se mij helpen?
- Wat is EDS?
- Hoe wordt EDS behandeld?
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FAQs
How serious is Ehlers-Danlos syndrome? ›
Vascular Ehlers-Danlos syndrome can weaken your heart's largest artery (aorta), as well as the arteries to other regions of your body. A rupture of any of these larger blood vessels can be fatal. The vascular type can also weaken the walls of the uterus or large intestines — which also may rupture.
Is Ehlers-Danlos inherited from mother or father? ›For a child to be affected both parents must pass on an EDS gene. With each pregnancy there is a 25% chance that each child will have the disorder.
What kind of doctor can diagnose Ehlers-Danlos? ›Rheumatologists commonly use biopsy, blood tests, heart and muscle function tests, and a variety of imaging tests to diagnose these diseases. Rheumatologists may use medications that calm the body's immune system, physical therapy, occupational therapy, and regular monitoring to manage these conditions.
What is the most severe form of Ehlers-Danlos syndrome? ›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. People with vEDS may have: skin that bruises very easily.
What is the average age of death for EDS? ›The median life expectancy for people affected by vascular EDS is 48 years.”
What does Ehlers-Danlos 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 get worse with age? ›Although symptoms arise at childhood, they become more severe in adulthood. The major clinical manifestations of EDS include joint hypermobility, skin hyperextensibility, and generalized connective tissue fragility [3,4].
Should you have kids if you have Ehlers-Danlos? ›Overall, pregnancy is well tolerated in hEDS. Possible complications are mainly attributable to joint hypermobility, skin and tissue fragility and abnormal collagen in blood vessels. It is generally a benign condition and the majority of women tolerate pregnancy well with good outcomes.
Is Ehlers-Danlos a disability? ›Yes, Ehlers-Danlos qualifies for disability benefits if you cannot work for at least 1 year. Even though there is no actual listing in the Social Security Administration's (SSA's) Blue Book to determine how to qualify you need to find your symptoms in another listing.
What medications should be avoided with EDS? ›by Drugs.com
With Ehlers-Danlos syndrome (EDS), experts recommend avoiding drugs that increase your risk of bleeding—such as anticoagulants and antiplatelet agents—because those affected with EDS are at higher risk for bruising and injury.
What can be mistaken for Ehlers-Danlos? ›
Patients with EDS, especially those with EDS hypermobility type, are often misdiagnosed with conditions such as fibromyalgia, chronic fatigue syndrome, or depression, given the overlap of symptoms and the psychosocial impact they have on the patient.
Can a blood test detect Ehlers-Danlos? ›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.
What is the mildest form of Ehlers-Danlos? ›Hypermobile Ehlers-Danlos syndrome (hEDS) is generally considered the least severe type of EDS, although significant complications, primarily musculoskeletal, can and do occur. The skin is often soft and may be mildly hyperextensible.
What is the best hospital for Ehlers-Danlos syndrome? ›Mayo Clinic doctors care for hundreds of adults and children with Ehlers-Danlos syndrome each year. Mayo Clinic in Rochester, Minnesota, Mayo Clinic in Phoenix/Scottsdale, Arizona, and Mayo Clinic in Jacksonville, Florida, are ranked among the Best Hospitals for orthopedics by U.S. News & World Report.
What makes Ehlers-Danlos worse? ›Pain. Widespread pain or pain in the limbs is a common feature of most types of EDS. This typically gets worse with exercise.
How much sleep do people with EDS need? ›Most need around eight hours sleep but people with hEDS/HSD or chronic fatigue may find that they need more than this.
Do people with EDS sleep more? ›Abstract. Ehlers Danlos syndrome (EDS) is a collagenic disease that has often been associated with different types of sleep disorders ranging from insomnia to obstructive sleep apnea (OSA). EDS usually has associated fatigue and excessive daytime sleepiness (ES), thus narcolepsy should be excluded as a cause.
Why do EDS patients look younger? ›Yes, Ehlers-Danlos syndrome can make you look younger. The patients with EDS do not have any wrinkles as the collagen is additionally stretchy. This makes their skin soft and young.
What triggers an EDS flare? ›Movement, Exercise, or Life Inputs: Not being prepared for the task at hand can create a pain flare cycle. Whether it is a much longer walk than your usual, standing or sitting for many hours without movement breaks, or exercises that exceed your current capacity, all of these can contribute to a flare.
What triggers EDS pain? ›Causes and contributors to pain in EDS can include joints coming out of position, previous surgery (often done to treat pain), muscle weakness, improper movement in the neck and back, or issues with sense of joint position.
How can you tell if someone has EDS? ›
- Hypermobile EDS: Typical symptoms include joint hypermobility; soft, velvety skin that bruises easily; and chronic bone or muscle pain.
- Classical EDS: Symptoms may include elastic, stretchy skin that bruises easily, hypermobile joints, muscle weakness, and delayed development.
7.2 Ehlers-Danlos Syndrome. EDS is a genetically and clinically heterogeneous heritable disorder characterized by abnormal collagen synthesis, and whose cardinal features include joint hypermobility, skin hyperextensibility, and soft connective tissue fragility [47].
How does EDS affect hair? ›The defects of the collagen previously reported in EDS account for the increased extensibility of the skin (1, 2). It is possible that the altered skin structure results in increased pliability of the skin which may allow the hair follicles to expand.
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.
Does EDS affect breasts? ›Raynaud's syndrome is also very common in EDS [27, 28] and can contribute to nipple and breast pain.
What are the bumps on my feet with EDS? ›Piezogenic papules
These small (less than 1cm) and soft skin-coloured lumps appear on the sides of the heel when standing and disappear when the foot is elevated. Although usually symptomless they can occasionally be painful.
The impact of EDS on fertility depends on the type and severity of the disease. Some patients may have difficulty conceiving while others may have no issues. According to a survey posted on the Ehlers-Danlos National Foundation website, the incidence of infertility was reported to be 43.3% among the 1,352 responders.
Can you get Social Security for EDS? ›You are only eligible for Social Security disability benefits, if your EDS results in a severe medical condition that will last one year. Likewise, you also receive benefits if your condition will result in death.
Is Ehlers-Danlos related to ADHD? ›Moreover, in a population-based matched cohort study in Sweden (n = 1,771), individuals with EDS were 5.6 times (95% CI: 4.2–7.4) more likely to have an ADHD diagnosis than those without EDS (18). Both autism and ADHD are commonly associated with the expression of tics.
Are EDS and autism linked? ›In addition, a 2016 study performed in Sweden indicated that people with EDS are more likely to have a diagnosis of autism than individuals without the condition. Other research has also shown that autistic people have higher rates of joint hypermobility in general, a major feature of EDS.
Does vitamin D help with EDS? ›
These findings suggest that vitamin D supplements may help reduce pain related to fibromyalgia and chronic widespread pain, especially for those with vitamin D deficiency. People with EDS/hypermobility and fibromyalgia should be mindful of maintaining healthy vitamin D levels.
What vitamins should I take if I have EDS? ›To reduce complications of skin fragility and promote wound healing, individuals with EDS-HT should take 750–1000 mg/day vitamin C and 1500 mg/day of methylsulfonylmethane (MSM) plus silica 3 mg/day [82].
What vitamins to take with Ehlers-Danlos? ›We therefore hypothesize that the symptoms associated with Ehlers–Danlos syndrome may be successfully alleviated using a specific (and potentially synergistic) combination of nutritional supplements, comprising calcium, carnitine, coenzyme Q10, glucosamine, magnesium, methyl, sulphonyl methane, pycnogenol, silica, ...
Does EDS show on MRI? ›Apart from a physical examination, skin biopsies, and genetic testing, imaging tests such as X-rays, computerized tomography (CT), and magnetic resonance imaging (MRI) can also help to confirm a diagnosis of EDS.
Can you donate blood if you have Ehlers-Danlos syndrome? ›Must not donate if:
Ehlers Danlos syndrome is usually a mild condition which typically presents with hypermobility of joints, joint pains and tendency to bruising. Most donors are treated symptomatically, usually with analgesics for joint pains.
2019 brought much hope to the long-silent-suffering Ehlers Danlos Community when Lena Dunham, Jameela Jamil, and SIA revealed their EDS diagnoses. It felt like a celebrity endorsement of sorts.
Can you have Ehlers-Danlos without stretchy skin? ›Skin and Connective Tissue: People with hEDS do NOT have to have profoundly stretchy skin! Most notably, in hEDS, the degree of softness, stretchiness, fragility, bruisability, and poor wound healing of skin differs from “normal” subjects but is mild in comparison to other types of EDS.
How does a rheumatologist diagnose Ehlers-Danlos syndrome? ›The doctor will test skin stretchiness and joint flexibility. Imaging tests can look for other signs and complications of EDS. A doctor can confirm the diagnosis of EDS through genetic tests performed on a blood sample. There is no cure for EDS.
Why is Ehlers-Danlos hard to diagnose? ›Because EDS can affect the entire body and its symptoms mimic other conditions, it can be very difficult to diagnose.
Do people with EDS have too much or too little collagen? ›Disease Overview
The problems seen in patients with EDS can be due to either the poor strength of collagen. It may alternatively be due to the absence of sufficient amounts of structurally normal collagen. The primary complications seen in EDS involve the skin, muscles, skeleton, and blood vessels.
Can you have Ehlers-Danlos and not be hypermobile? ›
Joint hypermobility is observed throughout the body in most types of EDS, but hypermobility may be limited to the hands and feet in some types. Although joint hypermobility is observed across all types of EDS, not everyone with a type of EDS has joint hypermobility.
Is EDS considered degenerative? ›EDS is a progressive, degenerative connective tissue disorder that causes microtears in multiple organs. It is common to see EDS patients entering their teens or twenties who then develop severe pain.
Which is the drug of choice for treatment of EDS? ›Nonsteroidal anti-inflammatory drugs (NSAIDs), tricyclic antidepressants, and serotonin/norepinephrine receptor inhibitors (SNRIs) are commonly given to EDS patients. Muscle relaxants and magnesium can also relieve muscle spasms. For severe pain, opioids may be prescribed.
Is Ehlers-Danlos extremely painful? ›Overall, approximately 90% or more EDS patients suffer from chronic pain.
Is EDS more painful than fibromyalgia? ›The pain intensity in EDS/HMS was like those found in spinal pain and WAD; fibromyalgia had the highest pain intensity.
Do people with Ehlers-Danlos get sick a lot? ›EDSers often have a lowered immune system, possibly due to chronic stress on multiple body systems or an IgG-3 deficiency. People with EDS seem to get more infections than people without EDS, and these infections often have similarities.
Does EDS qualify for disability? ›Yes, there is disability benefits available for people with Ehlers-Danlos Syndrome, but it is not always easy to qualify. Ehlers-Danlos syndrome “EDS” describes a few genetic (typically caused by a genetic mutation) conditions that cause a number of problems.
Can you live a long life with Ehlers-Danlos syndrome? ›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.
Can you live a full life with Ehlers-Danlos syndrome? ›EDS cannot be 'cured' but many people learn over time how to control it and live full and active lives. The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing. In addition you should seek referrals for any associated conditions you may have.
What can people with EDS not do? ›
Contact sports, such as soccer, football, and rugby, generally should be avoided. High-impact activities also should be avoided by most patients with EDS. These include running and basketball. Baseball, which requires a lot of running, also should be mostly avoided.
Do people with Ehlers-Danlos sleep a lot? ›Excessive daytime sleepiness (ES), fatigue, and other sleep disturbances are frequently reported by patients with Ehlers Danlos Syndrome2,3,4.
Does Ehlers-Danlos affect hair? ›Hair follicles of the skin in patients with EDS are macroscopically more enlarged than those of healthy subjects. Enlarged hair follicles are also observed in the skin of patients suffering from hidradenitis suppurativa (HS).
What triggers EDS flare ups? ›Movement, Exercise, or Life Inputs: Not being prepared for the task at hand can create a pain flare cycle. Whether it is a much longer walk than your usual, standing or sitting for many hours without movement breaks, or exercises that exceed your current capacity, all of these can contribute to a flare.
What medications should be avoided with Ehlers-Danlos syndrome? ›by Drugs.com
With Ehlers-Danlos syndrome (EDS), experts recommend avoiding drugs that increase your risk of bleeding—such as anticoagulants and antiplatelet agents—because those affected with EDS are at higher risk for bruising and injury.
Yes, Ehlers-Danlos syndrome can make you look younger. The patients with EDS do not have any wrinkles as the collagen is additionally stretchy. This makes their skin soft and young.
How many hours of sleep does Ehlers-Danlos have? ›Getting too much sleep can also worsen fatigue. Try to sleep for the same amount of time each night as this can lessen tiredness and help you to get into a good routine. Most need around eight hours sleep but people with hEDS/HSD or chronic fatigue may find that they need more than this.
Can Ehlers-Danlos cause mental illness? ›Moreover, patients with EDS are at a relatively high risk of mental disorders, such as mood disorders, and suicidal behavior accompanied by pain, including headache, muscle pain, neuralgia, abdominal pain, and malaise (17, 37, 46–50).