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As a result of multiple requests from the community, EDSers United is now offering Skype Appointments for those seeking consultations





Solutions for EDSers


Are you looking for physical therapy that is customized to your personal EDS-related situation? There are health and wellness facilities dedicated to serving EDSers and working with EDSers in and out of the pool in order to strengthen the muscles around the joint in order to prolong the deterioration caused by being born with EDS. The worst thing an EDSer can do to themselves in to not engage in physical therapy tailored to their specific situations.





Nutrition Crash Course

If you are seeking ways of building your energy levels, addressing dietary deficiencies, potentially swapping pills for food, etc., then you need to educate yourself on certain basic Nutrition Principles. Our "Nutrition Crash Course" will help you better understand some quick terms, how food labels work, and some available resources out there to help guide you to healthy eating and ultimately feeling better. 






Tips for EDSers


Many of us have come up with ways to make accomplishing daily tasks easier and less painful. Discover useful tips for EDSers by EDSers.






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Medical Marijuana


Some states allow the use of medical cannabis (also known as marijuana) to treat symptoms like chronic pain and nausea. Research has shown that medical cannabis may provide some patients that suffer certain given conditions with medical benefits. 





Physical Therapy


Resources



There is no Cure for EDS


Currently, there are no established treatment options or a cure for the underlying defect(s) that causes EDS, but the condition and its symptoms can be managed. The management of individuals with EDS is directed toward the specific symptoms that are apparent in each individual. Treatment may require the coordinated efforts of a team of specialists who may need to systematically and comprehensively plan an EDSer's management. Such specialists include pediatricians or internists; specialists who diagnose and treat disorders of the skeleton, joints, muscles, and related tissues (orthopedists); physicians who diagnose and treat skin disorders (dermatologists); specialists who diagnose and manage connective tissue diseases (geneticists); surgeons; physical and occupational therapists; and other health care professionals. Please visit the Research Library and review the list of articles under the Alternative Treatments category.


Living with EDS


can be quite challenging. Although at first glance an individual with EDS may appear perfectly normal, internally most are forced to deal with chronic pain due to chronic damage as a result of joint and muscle instability. Individuals with EDS have a high prevalence of additional complications including organ dysfunction, migraines, and joint dislocations. This can make everyday tasks difficult and painful to perform. 


Management of Ehlers-Danlos Syndrome



Current Management Guidelines


  • Early diagnosis is key to preventing the exacerbation of the afflicted body's progression towards premature deterioration and ultimate enhancement of the patient's lifespan and overall quality of life. So if EDS is suspected, schedule an evaluation with a geneticist as soon as possible.  
  • Braces are often recommended to help stabilize affected joints and prevent joint dislocation. 
  • People with vascular type EDS may get drugs to lower their blood pressure, to reduce the strain on their weak arterial walls.
  • Parents of young children with EDS and affected adult EDSers should take necessary precautions to prevent injuries and trauma, such as those that may occur during contact sports. Wearing protective clothing and special padding over pressure points may be beneficial.
  • Avoid excessive or repetitive lifting and other activities that produce undue strain or stress on already hypermobile joints. Low resistance exercises (such as aqua therapy is recommended to help increase muscle tone and stabilize loose joints. Physical therapy performed by a therapist who is experienced in working with patients with connective tissue and joint dysfunction can be very helpful in the management of long term health. In EDSers who report reduced physical activity, a dual energy x-ray absorptiometry (DEXA) scan is recommended to assess for low bone density (a common finding in EDSers). 
  • Maternal pregnancy risks for EDSers include cervical insufficiency, uterine prolapse, uterine tear, poor wound healing during the postpartum period, and excessive bleeding both during and post-­‐delivery. Females with EDS (especially vascular type) should be counseled concerning the increased risk of certain complication during pregnancy an delivery and the need for meticulous obstetric care.
  • Appropriate precautions and careful monitoring are essential before, during, and after dental or surgical procedures. Because fragile tissues and stitched (i.e., sutured) incisions or wounds may easily tear during or after surgery, unnecessary surgical procedures should be avoided. Accordingly, when surgery is necessary in individuals with EDS, specific surgical approaches require careful evaluation. Seriously consider alternatives to sutures, such as wound glues and adhesive strips.
  • Avoid excessive or repetitive heavy lifting and other movements that produce undue strain or stress on already hypermobile joints (for example: finger hyperextension that occurs with pushing off of a wall with the palms of the hands). EDSers want to minimize joint trauma by avoiding joint hyperextension or locking of the joints. Recurrent hyperextension of the joints may lead to a traumatic arthritis with associated joint pain.
  • It is important to see a cardiologist immediately after getting diagnosed with EDS. Murmurs of mitral valve prolapse are very common amongst EDSers with classic and hypermobile types. A baseline echocardiogram, including views of the aortic arch and aorta should be performed (always ask for copies for your own records). Children with normal results should be reevaluated every 1-­‐2 years and adults every 3-­‐5 years. Any indication of aortic enlargement should be reevaluated every 1-­‐2 years. If mitral valve prolapse is diagnosed, monitoring and screening are indicated to address subacute bacterial endocarditis precautions. (This means don’t forget to mention to your dentist, doctor, or surgeon that you have MVP!)
  • Consultation with a dentist is necessary. EDSers must practice meticulous dental care, which cannot be neglected. Temporomandibular disorders (TMJ), facial/jaw pain, and bone/tooth density need proper assessment and care. Periodontitis needs to be treated aggressively in EDSers,especially EDSers with Kyphoscoliosis type.
  • High-­‐dose (1-­‐4 g/d) ascorbic acid (Vitamin C) therapy has been tried and, in theory, has a potential effect. Clinical studies suggest that wound healing, even in patients no deficient in vitamin C, can improve with supplementation above the recommended daily allowance. In patients with Kyphoscoliosis type EDS, bleeding time, wound healing, and muscle strength seem to improve after 1 year of daily high-­‐dose vitamin C therapy; however, high-­‐dose vitamin C therapy is not considered the standard of care and requires medical clearance for use
  • Consultation with an ophthalmologist may be necessary. EDSers should be screened for myopia, retinal tears, and keratoconus.
  • Protecting joints and minimizing joint injury helps EDSers reduce pain, conserve energy, and maintain an active lifestyle. Avoid activities that involve overextension of the joints.
  • Minimize risks of slips and falls in the home by keeping walkways and corridors clear of toys and other small items. Do not use throw rugs.
  • If reaching or stretching causes pain or an increased risk of subluxation or dislocation of the joints, consider using devices such as long–handled combs and reachers to help accomplish tasks. Consider arranging storage areas to keep frequently used items within easy grasp.
  • EDSers should protect their joints and avoid undue trauma. EDSers must avoid entertaining other people by performing maneuvers "showing off" their joint laxity. Continued excessive stretching of the joints may further exacerbate the underlying disorder. EDSers should avoid undue trauma to the skin and other organ systems because of poor wound healing and skin fragility. In particular, a knowledgeable primary care physician will strongly discourage potentially traumatic recreational activities.
  • Support groups are important for EDSers to be able to discuss the impact of living with a chronic condition and the tolls of daily life limitations. Caregivers and family members can also benefit from attending these support groups as well. If you aren’t comfortable discussing in a group, then it is recommended that every EDSer seek a psychologist and/or psychiatrist in order to have a safe place to discuss life with EDS.