Have you ever been told you are double jointed? Can do unusual things with your joints? Maybe you have problems with your ankles rolling, or joints that often sublux or dislocate. Have you ever wondered why you are so tired, or at times forgetful? Has anyone ever said to you, “Where did you get those bruises?” Do your children have unexplained bruises? These are just a few signs of a real genetic medical condition that is called Ehlers Danlos Syndrome (EDS).
Ehlers Danlos Syndrome (EDS) is considered to be a rare condition that affects collagen production in the body. Collagen is essentially the “glue” that holds the body together. Since EDS is classified as a connective tissue disorder, it can affect the entire body, not just the muscles or joints. Individuals may meet the criteria for one of several groups (or types) of EDS, but can have symptoms and disorders that crossover into other types. Testing for EDS can be done by genetic blood tests, tissue biopsy, urinalysis, or clinical evaluation. Even though each of those methods has a chance for error, a properly trained doctor can normally make an accurate diagnosis.
The reason EDS is considered to be rare, is the lack of understanding and/or underreporting of this medical condition by health care providers. EDS patients become accustomed to false negative results from diagnostic medical tests. Often people with EDS are labeled as being hypochondriacs. This happens because EDS patients often present with numerous medical complaints and symptoms that are, at first glance, seemingly unrelated. Sometimes doctors have a hard time exploring and diagnosing outside the realm of conventional medical thinking. Compounding the problem of misdiagnosis is that individuals with Ehlers Danlos Syndrome have to cope with chronic severe pain. The pain may be difficult to explain or the source of the pain may not show on medical studies, which leads to some being labeled as drug seekers. Outdated medical thiking once concluded that there is no pain associated with EDS, but this is not true. The pain associated with EDS not only affects adults, but also children and teens with the condition. Many times undiagnosed youth are told that the pain is just “growing pains” when, in fact, it is a symptom of EDS.
Students with EDS are normally very intelligent, even when accompanied with developmental disorders such as Autism, but they have serious struggles at school. Pain, writer’s cramp, and associated hypermobility of the joints can affect student performance, resulting in accusations of the student being lazy. Students with EDS struggle with writing quality and duration due to wrist and finger pain. Educators and other professionals should observe the fingers holding the writing instrument to see if they are bent backwards or have very low muscle tone preventing proper grasp. These are important signs of EDS in students. Additionally, EDS affects vision, tracking, and cognitive functions, which affects the ability to read and process information compared to their non-disabled peers. Students with EDS require proper modifications, such as extra time, frequent breaks, and assistive technology that will allow them to exhibit their maximum potential.
There are many more issues that will hinder a student with EDS, but the worst is low self-esteem and being the targets of bullying by their peers. Students with EDS know that they are different and unable to do the same things as their non-disabled peers. Bullied students have been known to experience increased stress, pain, and other medical issues. Students with EDS are frequently tardy or absent because of their compromised immune system or complications related to their complex medical condition.
Most people with Ehlers Danlos Syndrome can live a long life, but it may be a life full of chronic pain and fatigue, complications, and setbacks. Due to such hardships, life may be clouded by depression. The quality of life may be compromised due to the lack of understanding of the condition by family, peers, medical professionals, and educators. Sadly, Vascular EDS (Type IV) is a silent killer due to serious cardiovascular complications mainly affecting major arteries. Those with EDS Type IV may never see their first prom or graduate from high school. Individuals who do manage to make those milestones in life normally don't live to celebrate their 50th birthday. Those who have EDS Type IV have all the complications associated with the other types of EDS, making each day of their life a challenge. Each day they silently celebrate one more day of life. Even if a patient is classified with another type, vascular complications can affect their treatment and life as well.
EDS is a complex medical condition since it can and does involve many more issues. Some of the other medical conditions that can be associated with EDS are:
Postural Orthostatic Tachycardia Syndrome (POTS)
Irritable Bowel Syndrome
Vitamin D deficiency
Degenerative Disk Disease
Scoliosis and Kyphosis (can also by EDS type VI)
Many Neurological and other issues
When EDS is placed into perspective it is easier to understand, especially once it is diagnosed. There is no specific treatment or cure for EDS, but there is hope. The medical field has to think outside of the box in order to help those with EDS, and they need to believe in something that they can’t see. We believe in air even though we cannot see it, so why not do the same for Ehlers Danlos Syndrome? Just because we cannot see the cause of the pain or how it affects the body does not mean the condition is not real. The effects of EDS are as individual as the people with the condition. When a person is struggling for a few days/month or in a wheelchair for a short period of time and then you see them having a good day, it does not mean they are faking a condition. Who said you have to look sick to have a medical condition? EDS can be debilitating from a young age leaving people unable to work.
To learn more about EDS please visit Center for Ehlers Danlos Syndrome Alliance’s (CEDSA) website or give us a call. CEDSA is there for families, to help them walk through the journey of life with EDS. But we are not stopping there. CEDSA works with communities, medical professionals, and schools to insure that those who have EDS can enjoy the best possible quality of life. CEDSA is proud to advocate for individuals with Ehlers Danlos Syndrome and their caregivers.
Written by: Eugene Wilson