Ehlers-Danlos Syndrome
EDS is a disorder that affects the connective tissues of the body. These tissues help hold bones, blood vessels, and many muscles together. The symptoms of EDS can range from mild to debilitating, affecting different people differently. Patients with EDS often have poor muscle tone and hypermobility. Their skin can also become loose and velvety.
Patients with EDS should see their doctor regularly. They should undergo imaging tests to determine the extent of damage to their blood vessels. A special dye may be injected into the blood vessels to make them more visible on X-rays. A woman with EDS should also be monitored during pregnancy. If she experiences unexplained pain, she should seek medical attention immediately. If the pain is severe, she may consider wearing a MedicAlert bracelet.
In addition to medical care, patients with EDS benefit from an interdisciplinary approach. To diagnose patients with Ehlers-Danlos syndrome, a primary care physician must have a high index of suspicion, perform a physical exam, and conduct genetic testing. Depending on the severity of the disease, the patient may need to see a specialist.
Patients with EDS may also have hypermobile or vascular EDS. A study of the association between these two conditions has revealed that hypermobile and vascular EDS patients have higher AIx values than those with classical and hypermobile types. This association was not significant among the different EDS subtypes.
EDS Benefits
If your symptoms of EDS are severe enough, you might be eligible to receive disability benefits from the Social Security Administration (SSA). Social Security will consider how severe your symptoms are, and if they interfere with your ability to do everyday tasks. Many people with EDS have physical limitations and sensory impairments, which can make them ineligible for work.
Depending on the severity of the disease, physical therapy, and assistive devices can help patients manage the pain. For example, an ergonomically-designed mattress and comfortable writing utensils can ease musculoskeletal pain. Treatments for the condition are customized to the patient's needs, and supplements of vitamin D and calcium may also help bone density. Patients with EDS may also benefit from routine eye exams to monitor their eyes' health and appearance.
Genetic changes may be a cause for each subtype of EDS, and patients within the subtypes may vary in other ways. Below, we will discuss each type in detail. Although each subtype shares some common characteristics, there is significant variation between patients with different subtypes. If you have EDS, you may want to join the EDS register to help researchers develop better treatments. However, you can opt-out of the registry at any time.
The EDS Benefits Oversight Committee is responsible for administering the EDS Benefits Plan. It has the authority to amend or modify the Plan as it deems necessary. It can also delegate the administration of the Plan to another entity. However, these decisions must be made in the best interest of the EDS.
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