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Posted on 17th of October, 2012
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Tags: EDS, Ehlers-Danlos Syndrome, disability, sex, relationships,

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome refers to a grouping of inherited disorders that affect your connective tissue. This includes skin, joints, and blood vessel walls. This can cause overly flexible joints, and stretchy, fragile skin. There are various types of this syndrome, including Classical Type which causes hypermobility, skin hyperextensibility, and fragility. This means that the skin tears easily and bruises easily as well. Dislocations and scoliosis are common and many people go through many sprains and strains of the joints. Hypermobility type is mainly just the joint problems. Sprains and strains are very common and dislocations are frequent. Vascular type can cause the walls of the blood vessels, intestines, and uterus to rupture. This is a serious manifestation and can lead to death. Clubfoot can be present at birth, and veins can be very visible through the skin. Kyphoscoliosis type involves fragile globe of the eyes, significant skin and joint laxity, and scoliosis. Arthrochalsia type includes shortness in height, and severe joint laxity and dislocations. Dermatosparaxis type involves severely fragile skin that is soft and doughy with sagging and folding. Tenascin-X deficient type involves joint hypermobility, hyperelastic skin, and fragile tissue. Each kind involves a different kind of gene mutation and may involve different tests to diagnose. Family history is usually a big part of diagnoses, genetic tests and skin biopsies may be needed. Treatment is usually a variety of different treatments. Pain medication is common, as is blood pressure medication. Physical therapy can help strengthen joints, and it’s important to know how  to take care of skin wounds. It’s also important to avoid activities that put you at risk, like contact sports. In rare cases surgery is needed to help repair joints although skin usually doesn’t heal well and may need extra attention. It’s important to protect your skin by using mild soaps and sunscreen, and to reduce clutter in your house to make it easier to move around without injury.

It’s important to have a good support system and to be able to talk to your partner about your illness and what you’re going through. Many people with chronic illnesses go  through emotional turmoil, so a therapist can help. It’s very common for anyone with hypermobility to get dislocations or at least strains during sex. It can help to use pillows to prop yourself up, try positions that are easier on you, and know your limits. You can utilize sex aids like swings or slings that help you remain in a comfortable position. It’s also really important to utilize non-intercourse forms of sex and lots of foreplay. You may also need lube. It can also be useful to use sex toys like vibrators as this involves less work. Communicate to your partner what is or isn’t okay. If your partner is too rough this can lead to injury. You need to tell them what you need and what isn’t possible. Try new things and focus on the things you can do. Also, probably a good idea to avoid spermicide as they increase the risk of microtears and that’s something that your skin can’t heal very well. Use lube that is glycerin and paraben free and that’s hypoallergenic and good for sensitive skins. Know your limits, and also test your limits to know what works for you and talk to your partner about it. It’s also important to use birth control and contraceptives, as EDS is hereditary and in many cases goes from parent to child if you are going to have children it’s best if you can plan it with a doctor first.

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