How to Live with Ehlers Danlos Classical Type

Three Methods:Handling the Physical ChallengesMaking Lifestyle ChangesSeeking Care

Ehlers Danlos Classical Type is a type of Ehlers Danlos Syndrome (EDS), a genetically inherited medical condition. Classical EDS is a condition that affects your connective tissue (such as cartilage) and makes your body more susceptible to damage from what otherwise might be a minor bump or scrape. Currently, there is no cure for EDS in any of its forms.[1] However, with some careful lifestyle changes, preventative care, and treatment of the symptoms, a person with EDS Classical Type can still live a full life, especially if the disease is diagnosed early.

Method 1
Handling the Physical Challenges

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    Recognize the symptoms. If you suffer from EDS Classical Type, you can expect to see the following.
    • Skin hyper-extensibility.[2] This means the skin is very elastic, stretching very easily and then snapping back into place. The skin of someone with this condition is also often particularly smooth and velvety to the touch.
    • Easily being cut and bruised. People with EDS Classical Type both bruise and bleed much more easily than the average person, due to the fragility of their tissue.[3] People with EDS Classical Type also find that wounds take longer to heal and are more likely to scar.[4]
    • Joint hypermobility. Depending on age, gender, and ethnicity, many people with EDS Classical Type find they are unusually flexible.[5] Specifically, people with this condition have loose and unstable joints that dislocate easily.[6] Because of this, people with Classical EDS are often more prone to sprains and other joint injuries.
    • Absence of muscle tone. Young children with EDS often show a lack of muscle tone, as the development of their muscles is often delayed.[7] This weakness can also lead to a delay in motor skills such standing or walking.[8]
    • Chronic pain or fatigue. Unrelenting pain (especially around the joints) and/or exhaustion are also common in people who suffer from Classical EDS.[9]
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    Protect your body. EDS makes your body more fragile, so you'll need to take appropriate steps to avoid situations in which you could be injured. You'll also want to use your clothing to shield yourself from harm.
    • Because they are easily injured, people with Ehlers Danlos Classical Type should avoid all contact sports, as well as other situations in which they are likely to be bumped or jostled with any force.[10] Activities like football, boxing, and even running (due to the strain it can place on the joints) are best avoided to reduce the risk of injury.
    • In day-to-day life, dress yourself in such a way as to reduce the risk of injury. Limit the exposure of your skin and when possible wear multiple layers to prevent scrapes and cushion your body.[11]
    • Always wear a helmet when cycling.
    • Wear elbow, knee, and shin pads when participating in outdoor activities. Soccer pads and ski stockings work well. Children with this condition may need to wear pads at all times.[12]
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    Get the right nutrients. Certain foods can help your body better cope with problems created be Ehlers Danlos Classical Type. Specifically:
    • Take vitamin C (ascorbic acid). It can reduce bruising when taken regularly.[13] A dose of two grams per day is recommended for adults, though there is no upper limit on how much you can take.
    • Glucosamine, magnesium, calcium, and vitamin K are also thought to be helpful in alleviating the joint problems often caused by EDS. All of these are available in supplement form.[14] Consult a physician before making any major changes in your diet.
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    Avoid aspirin. People with EDS Classical Type should not take Acetylsalicylate, more commonly known as aspirin.[15] Many people with this disorder are sensitive to aspirin, and it can worsen bleeding problems.
    • Other anti-inflammatory drugs may useful in treating joint pain and can be taken to treat discomfort.[16]
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    Choose the right physical activity. Specifically, do non-weight bearing exercises. Exercise is important for people with EDS Classical Type. It helps build muscle strength and coordination that can otherwise be difficult to maintain given the joint problems that often result from this condition.[17]
    • Swimming, badminton, table tennis, and walking are all good options.[18] These and other activities that don't require lifting heavy weight or the risk being struck with hard objects should be undertaken in moderation.

Method 2
Making Lifestyle Changes

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    Accept your limitations. As difficult as it may be, to remain healthy and avoid injury, you will have to accept that you need to limit or avoid some tasks that would be routine for others. Specifically:[19]
    • Avoid heavy lifting whenever you can.
    • Try to sit down for any task that allows it.
    • Avoid unnecessary bending and stretching.
    • Stop tasks when you feel tired.
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    Plan ahead. To the extent that you are able, organize tasks over time in such a way as to make them more manageable. Plan your tasks for home and work carefully. For example:[20]
    • Make a list of tasks you want to carry out, and prioritize them. When possible, eliminate those tasks that are least important.
    • Alternate active tasks with those you can do while sitting.
    • Look for energy saving shortcuts and ways to divide heavy tasks into multiple lighter ones.
    • Rather than "clean the kitchen," for example, break this job into several smaller tasks that can be interspersed with physically easier tasks. You might, for example, sweep the kitchen floor, then sit down and balance your checkbook, then wipe the kitchen counters, then sit down and answer emails, and so on.
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    Make your house more accessible. There are many things you can do to make your home easier for you to live in and minimize strain and fatigue. For example:[21]
    • Replace low, soft chairs with seating that has firm and supportive upholstery to make standing and sitting easier. Similarly, have a raised toilet seat installed.
    • Install seating in your shower.
    • Keep a bag at the top and bottom of your stairs so that you can move any objects up or down in a single trip.
    • Get a long handled dustpan and lightweight vacuum for easier cleaning.
    • Keep as many kitchen items as possible at around waist level to avoid bending or stretching to reach items.
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    Ask for help. Get help with challenging tasks from friends or family members. The less energy you have to use on tasks that could be carried out by others, the better.
    • For example, if you need help moving something heavy, you could say to a friend: "My condition makes it difficult for me to move this chair up the stairs. Would you be willing to do it for me?"
    • Consider occupational therapy. An occupational therapist can help you find ways to minimize the strain placed on you by day-to-day activities, such as those related to your job.[22]
    • An occupational therapist may also be able to provide you with specialized equipment to make your life easier and minimize strain and pain, such as special braces. These therapists can also do assessments of your home and workplace to look for potential hazards and give you advice on how to pace activities to avoid fatigue.[23]
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    Get enough rest. People with EDS often have trouble sleeping, in part due to chronic pain and discomfort. Make sure to allocate plenty of time for rest. Take breaks between tasks and go to bed early.
    • Rest helps your muscles to recover their energy.[24]
    • Even for short breaks, consider lying down rather than resting in a chair.
    • Get a firm mattress that provides plenty of support to make resting as comfortable as possible. Make sure it is of a height that makes it easy to lie down and get up.
    • Use a small pillow that will not push your head forward too much.

Method 3
Seeking Care

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    Find an experienced practitioner. Because EDS is relatively rare, many doctors have little experience with it. Ask your general practitioner if he or she can refer you to a specialist who understands the disease well and is up on the latest treatments.[25]
    • You may nee to travel to see a specialist, due to the rareness of this disease.
    • If there is not a doctor in your area experienced in treating EDS, at a minimum, seek a specialist in Physical Medicine and Rehabilitation. Such a person can help you develop a rehabilitation plan to help with joint pain.[26]
    • Get children into physiotherapy. If your child has EDS Classical Type, make take him or her to see a physiotherapist. This will be important for helping his or her muscles and motor skills develop as well as possible.[27]
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    Seek medical treatment for wounds. If you or someone you care for has Classical EDS and is wounded, treat this seriously. Deep stitches will often be necessary and should be applied as soon as possible.[28]
    • Dermal (skin) wounds need to be closed up without stretching the skin to avoid scarring[29]
    • Stitches must typically be left in for twice as long as would be typical with an ordinary patient.
    • Seek medical care for any wound in which the edges of the cut are separated from tissue underneath, or which will not stop bleeding. Likewise, see a doctor immediately about any dislocation or other injury of a joint.
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    Get regular check ups. People with EDS need to see a doctor regularly to evaluate their conditions. A doctor familiar with this condition can help make realistic assessments and offer advice for preventative care.
    • Starting from childhood, people with Classical EDS should receive cardiac echos on a regular basis.[30] EDS Classical Type can result in floppy heart valves, which can obstruct the passage of blood to and from the heart. This can be detected by cardiac echos.
    • Be especially vigilant during pregnancy. The weaknesses in body tissue that stem from Classical EDS can lead to cervical problems which may result in risks for both the mother and her child.[31] Close monitoring of mothers with EDS is also recommended during the immediate postpartum period.
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    Seek counseling. Most people with EDS deal with ongoing pain, which can make life difficult. Doctors often recommend seeing a psychologist, psychiatrist, or other counselor to help patients learn to deal with the pain and the frustration caused by the lifestyle limitations EDS creates.[32]
    • People suffering from EDS often develop sleep disorders and poor mental health, which a qualified counselor can help you deal with.
    • Genetic counseling is also a good idea. The purpose of this counseling is to help patients understand the condition they are suffering from, how it is passed on, and the risk of passing it on to children they might have.[33]


  • Keep medical instructions on your person in case you are ever in an accident. They should specify that you are not be given Acetylsalicylate, as well as any other information your doctor thinks would help someone to treat you effectively in case of emergency.
  • The Ehlers-Danlos Society has a free email "helpline" that you can contact with general questions. You can contact them by sending an email to Their volunteers are not doctors, however, and cannot provide medical advice. Seek a qualified physician in case of any emergency.

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Categories: Disability Issues | Conditions and Treatments