Ehlers-Danlos syndromes (EDS) are a set of connective disorders of the tissue that are genetic and diverse in how they affect the body and their genetic causes (Johansen, 2020). The disorders are usually categorized by joints hypermobility, fragile tissues, and hyperextensibility of the skin. Moreover, the disorders are currently categorized into thirteen subtypes. Each of the disorder subtypes has a clinical set of criteria. It helps with the diagnosis whereby it matches the patient's symptoms to the minor and major criteria to identify the complete fit of a subtype. A definitive diagnosis should be made to determine the EDS subtype as most EDS symptoms are similar to other connective tissue disorders (Tinkle et al.,2017). The paper aims to discuss Ehlers-Danlos syndrome, its causes, prognosis, symptoms, common treatment options, potential psychosocial implications, its impact on patient’s lifestyle, potential accommodations and assistive technology options for overcoming barriers in the workplace.
A description of chronic illness or disability causes, common symptoms, and prognosis
Common clinical symptoms of EDS disorder are most usually skin and joint-related. The symptoms include joints hypermobility, whereby the joints become unstable and loose and are prone to frequent dislocations, early onset of osteoarthritis, and hyperextensible joints (Tinkle et al.,2017). Skin symptoms include:
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Variable skin hyper-extensibility.
Severe scarring.
Development of molluscoid pseudotumor.
Poor wound healing.
According to Kohn & Chang (2020), EDS can be hereditary as a recessive or dominant genetic disorder. The dominant genetic ailment happens when only one copy of an anomalous gene is required to cause a certain disease. In recessive genetic disorder, an individual inherits two copies of an abnormal gene for the same trait, one from each parent. A person with EDS's outcome depends on the particular type of disorder that they exhibit as the symptoms vary in severity and frequency. Even though all types of EDS are life-threatening, most individuals often have a normal lifespan. Therefore, when one is diagnosed with EDS in a family, it is crucial to contact a clinician to evaluate further and determine the family's inheritance model.
Common treatment options (Evidence-based therapies)
Common treatment options include physical therapy, whereby the joints with frail connective muscle are most probable to dislocate. The primary treatment for EDS is done to stabilize joints and strengthen muscles. A therapist recommends specific braces to help in preventing the dislocation of joints (Stern et al., 2017). There is no known cure for EDS, and the treatment offered helps prevent further complications and manage the symptoms. Rehabilitation is crucial in joint hypermobility management. 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 suggested by Kohn & Chang (2020), no evidence-based protocols are currently available.
Description of potential psychosocial impact (vocational/educational, independence, community participation, self-esteem/self-image, family impact, social connections, etc.)
Research has found out that individuals who suffer from EDS have to deal with concerning their social image. Although they might appear to be normal, there are many niches in the performances of their daily routines that they cannot fill and have many restrictions. Society may term them lazy, tired, and apathetic individuals who cannot perform a project when, in the real sense, they are too tired to do so (Stern et al., 2017). Some patients with the disorder might choose to isolate themselves socially and decide on making social plans that are short-term because they cannot predict how they will feel in the next moment.
Moreover, some patients term physical exercises as hard, and most have abandoned them altogether due to frequent exhaustion. Economically, most patients are dependent on other people even for treatment as they cannot work due to their physical exhaustion. Individuals with EDS confirm the downside the disease has on their balance and psychological well-being. The patients do not feel emotional and psychological support that would help them cope with the disease's effects (Hill, 2017). The disorder makes them feel useless as they are willing to do things, but their physical conditions limit them. Some of them take almost two days in bed without getting up, affecting them psychologically and emotionally.
Support groups and patient’s association positively offers support as they help the individuals feel that they are not alone and that there are people who care about them. Also, family members might feel burdened by patients who have the syndrome as they cannot tend to themselves fully (Hill, 2017). The patients' dependence might make the family members detach themselves from them, leaving them helpless and lonely.
Analysis of potential functional limitations and barriers to employment and independent living for this chronic illness or disability
Moreover, the patients become incapable of performing complex and exhaustive tasks due to their physical condition. Most of them who are employed fail to complete their assigned work due to easy exhaustion. Most of them have difficulties with transport and special job features. Moreover, most employers find it hard to employ people with the disorder to be considered less productive. Some persons also do not find employment after the disclosure of their ailment (hill, 2017). Thus, the disease acts as a barrier to work as individuals with the disease continue behind dependent on other people.
Research also shows that patients with EDS have poor functional health status in work-related environments. Most are forced to quit their jobs due to issues such as chronic pain. Others change their careers to ones that are better suited to their physical conditions. The support groups have also enabled patients with the disease to be independent, as they help them reduce anxiety and fear associated with the symptoms to manage the activities in their lives (Johansen, 2020). Also, cognitive-behavioral treatments such as awareness of thoughts and patterns in life have been quite effective in making sure patients with the disorder embrace independence. Moreover, the therapies help patients to improve their ability to manage experiences that are linked with fatigue and chronic pain.
A review of potential accommodations and assistive technology options for overcoming barriers in the workplace
According to Johansen (2020), skills and knowledge have been increased in working environments for people with the disorder through expert consultation, supervision, education, and training. Moreover, state and federal laws that help and support individuals with the disorder have been put into motion to protect their workspace. Also, a barrier-free communication and physical environment in which people with disabilities may access psychological help (Johansen, 2020). It helps them reduce emotional and psychological stress in order to be more productive in their work.
Employers should recognize the wide range of personal responses to develop, implement and plan psychological interventions. Employers of people with the disorder have enhanced the working environment that educate, and supports them. They have also perfected skills deficits in the workplace to create a conducive work space for the patients (Johansen, 2020). The perspectives of the patients have been promoted and kept paramount for their integration, choice, determination, and least restrictive alternatives.
In conclusion, EDS can be inherited as a recessive or dominant genetic condition. The disorders are usually characterized by hypermobility of the joints, tissue fragility, and skin hyperextensibility. Common clinical symptoms of an EDS disorder are most usually related to skin and joints. Common treatment options include physical therapy, whereby the weak joints that consists of connective tissues are most prone to dislocation. Most patients are dependent on other people and family members for treatment and upkeep as they cannot work due to their physical exhaustion. Necessary interventions and practices should be made possible by the government to create a conducive working environment for individuals with the syndrome to achieve their independence .
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 (Vol. 175, No. 1, pp. 48-69).
