Causes
Ehlers-Danlos syndromes (EDS) are a set of connective tissue disorders of the genetic tissue and are diverse in how they affect the body and their genetic causes. The diseases are characterized by joints hypermobility, fragile tissues, and hyperextensibility of the skin (Johansen, 2020).
Common Symptoms
Common clinical symptoms of EDS disorder are most usually skin and joint-related. The symptoms include joints hypermobility. The joints become unstable and loose and are prone to frequent dislocations, early onset of osteoarthritis, and hyperextensible joints (Tinkle et al.,2017). Symptoms of the skin include:
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Variable skin hyper-extensibility.
Severe scarring.
Development of molluscoid pseudotumors.
Slow wound healing
Prognosis
Individuals with Ehlers-Danlos syndrome usually have a short life expectancy of up to forty-eight years. Most patients will have a significant event by the time they reach forty years. Patients who have a severe form of the disorder have a shorter lifespan, mainly because of potential restrictive lung disease and arterial aneurysms. Instant death can occur after a significant blood vessel's rapture and visceral perforations (Kohn & Chang 2020).
Common Treatment Options
Physical therapy: Common treatment options include physical therapy, whereby the joints with weak connective muscle are most likely to dislocate. In therapeutic plans for EDS, the physical therapist must focus on balance and proprioception strategies, awareness in the advanced stage of EDS. Simultaneously, in the long-term EDS the emphasis is made on concentric and muscle reinforcement (Stern et al., 2017). However as pointed out by Kohn & Chang (2020), no evidence-based protocols are currently available.
Exercising: The primary treatment for EDS is exercising, which is done to stabilize joints and strengthen muscles. A therapist recommends specific braces to prevent joints dislocation (Stern et al., 2017). Most individuals with the disorder must perform low-impact exercises, which help them strengthen their core muscles. Activities such as yoga are beneficial, but care should be taken when performing the exercises to avoid the risks associated with overstretched muscles. Also, swimming is recommended for EDS patients as it is highly beneficial (Stern et al., 2017).
Rehabilitation: Rehabilitation is crucial in joint hypermobility management. In therapeutic plans for EDS, the physical therapist must focus on balance and proprioception strategies and awareness in EDS's advanced stage. Simultaneously, in the long-term EDS, the emphasis is on concentric and muscle reinforcement (Stern et al., 2017). However, as Kohn & Chang (2020) pointed out, no evidence-based protocols are currently available.
However, there is no known cure for EDS, and the treatment offered helps prevent further complications and manage the symptoms.
Physical symptoms : Patients who have EDS experience hypermobility, which is usually mild and causes pain only after an exercise's performance. They deal with excruciating pain, joint dislocations, digestive issues, poor healing, bladder issues, difficulties in walking, dizziness, and chronic fatigue. Thus, it makes the patients dependent on other people. EDS is quite complicated and can result in severe complications such as arthritis and heart defects. If the symptoms are not managed, likely disastrous results on a patient will occur.
Emotional effects : People with EDS are commonly termed as lazy, anxious, and clumsy, making them have low self-esteem. Also, high levels of depression and anxiety are expected among patients with EDS, which increases as they experience pain. They also have high levels of fear of movement as they are afraid of the constant extreme pain associated with it. Additionally, EDS patients have sensitization to bodily sensations, signals, and pain.
Health-related quality of life and employment outcomes : People with EDS mostly find it hard to work due to severe symptoms associated with the disorder. They experience transport difficulties in functioning, tasks, and work pressure. Moreover, problems arise when the requirements of jobs do match with the functional abilities of EDS patients. Also, patients with the syndrome find it quite hard to adapt to their professional life due to their physical limitations, thus reduces the type of work and number of hours they put in their work. However, scientists propose that work has positive effects on the lives of the patient and helps build their independence.
The Psychological Impact of EDS
Some patients with the disorder might choose to isolate themselves socially and decide on making social plans short-term because they cannot predict how they will feel in the next moment. Studies have shown that depression. Anxiety and other mood disorders are common in individuals who have the syndrome. They mostly experience chronic pain and fatigue without a cause that is known. Patients are at risk of being diagnosed with stress and depression. Moreover, they may experience panic attacks thus have the likelihood of having hypermobile joints.
Potential Accommodations for Overcoming Barriers in the Workplace
Challenges with work : People with EDS have been allowed to change workplace tasks to accommodate their physical needs.
Difficulties with transport : Patients employed have been provided with reserved parking to minimize the area's challenges.
Training : Changes have been made in the presentation of training and test materials to suit people's needs with the disease.
Flexible schedule : A flexible schedule has been put into place to suit employees' needs with EDS.
Change in products, software, and equipment : Various changes have been made to adjust the software, products, and equipment to make it easier for EDS employees to work efficiently.
Resources
Job Accommodation Network: [Disability Employment Accommodations] Toll Free: (800)526-7234| http://AskJAN.org
Anxiety Disorders Association of America: [Informational and Provider Resource]: Direct: (240)485-1001 Fax: (240)485-1035 http://www.adaa.org
Office of Disability Employment Policy: [Disability Employment Rules] Toll Free: (866)633-7365 | http://www.dol.gov/odep/
American Academy of Experts in Traumatic Stress: [Informational Resource]: Fax: (631)543- 6977 info@aaets.org http://www.aaets.org
References
Hill, J. C. (2017). Zebras in the workplace: Vocational rehabilitation considerations for individuals with Ehlers-Danlos Syndrome. Journal of Vocational Rehabilitation, 47 (2), 197-206.
Johansen, H., Velvin, G., & Lidal, I. (2020). Adults with Loeys–Dietz syndrome and vascular Ehlers–Danlos syndrome: A cross‐sectional study of health burden perspectives. American Journal of Medical Genetics Part A, 182 (1), 137-145.
Kohn, A., & Chang, C. (2020). The relationship between hypermobile Ehlers-Danlos syndrome (hEDS), postural orthostatic tachycardia syndrome (POTS), and mast cell activation syndrome (MCAS). Clinical Reviews in Allergy & Immunology, 58(3), 273-297.
Stern, C. M., Pepin, M. J., Stoler, J. M., Kramer, D. E., Spencer, S. A., & Stein, C. J. (2017). Musculoskeletal Conditions in a Pediatric Population with Ehlers-Danlos Syndrome. The Journal of Pediatrics, 181 , 261-266.
Tinkle, B., Castori, M., Berglund, B., Cohen, H., Grahame, R., Kazkaz, H., & Levy, H. (2017, March). Hypermobile Ehlers–Danlos syndrome (aka Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history. In American Journal of Medical Genetics Part C: Seminars in Medical Genetics.
