If you regularly dislocate your joints, you may have Ehlers-Danlos syndrome, which is a group of connective tissue disorders that are caused by the disruption of the integrity of collagen. Ehlers-Danlos is not rare, but it is rarely diagnosed. While there is no cure, there are treatments that can help alleviate your symptoms. Here's what you need to know.
Ehlers-Danlos is a group of six or more genetic disorders. If you have it, chances are high that someone else in your family has had it or does have it since it is hereditary. Collagen is the necessary glue of your body. Collagen is a protein that allows your tissues to stretch to a certain limit and then return back to normal. Collagen can be found throughout the body, which is why there are various types of Ehlers-Danlos syndrome in order of prevalence:
- hypermobile—joints extend further than they should.
- classical—hypermobility and skin stretches further than it should.
- vascular—fragile artery, intestine, and uterine tissues
- kyphoscoliotic—loose ligaments, low muscle tone, weak sclera (whites of the eyes)
- arthrochalasia—misaligned vertebrae, hip dislocations, fragile skin
- dermatosparaxis—severely fragile and sagging skin
It's important to note that people with this condition can be affected by more than one type. Obviously, the symptoms vary depending on the type(s) you have. The most common type is hypermobility, which is the type that often leads to recurrent dislocated joints.
With the various parts of the body that can be compromised, there are a number of complications that can be due to Ehlers-Danlos, including autonomic disorders, cardiovascular problems, chronic pain, compromised immune systems, mast cell problems, and gastrointestinal disorders such as gastroparesis. Autonomic refers to your body's natural processes that are supposed to happen automatically, such as breathing, body temperature, heart beat, and digestion. When your autonomic functions do not work properly, you may feel fatigued and have difficulty with brain fog.
Due to all of the various symptoms and complications that can happen, it's very important that you write down every symptom that you have, even if you don't feel that they relate in any way to your dislocated joints. Show the list to your primary care physician. This is important because, unless you disclose every possible symptom and complaint, your physician will not know what you are experiencing so he or she can refer you to the appropriate specialists.
Since Ehlers-Danlos is a genetic disorder, you will get a referral from your primary care physician to a geneticist. During the initial evaluation, you can expect a lengthy and detailed question and answer session regarding all of the symptoms and complaints you have. Your primary care physician will send a detailed history to the geneticist prior to your appointment so he or she can review it. For example, perhaps you had several instances in which you suddenly broke out in hives and the cause was not determined. Instead of those instances being allergic reactions, they may have been symptoms of a mast cell disorder, which is one of the possible complications of Ehlers-Danlos.
You can also expect referrals to the various specialists who deal with the different types of Ehlers-Danlos. For example, if your Ehlers-Danlos affects your veins and arteries, you will need a referral to a vascular doctor. Another example is if the whites of your eyes are affected, a referral to an ophthalmologist will be needed. As was said before, there is no cure for Ehlers-Danlos. However, there are treatments available. Obviously, treatment depends on the type(s) you are diagnosed with but can include medication, physical therapy, and prolotherapy. Your primary care physician should be kept updated on any new diagnoses and treatment plans.