As we know, Ehlers-Danlos syndromes (EDSs) are caused by a genetic mutation. Hypermobile joints, loose skin, and fragile tissues are all symptoms of EDSs, which are caused by a deficiency in connective tissue synthesis. There are thirteen different kinds of EDS, each with a substantial amount of phenotypic variability. The total prevalence of EDSs ranges between 1 in 2500 and 1 in 5000, with the classic and hypermobile EDS variations being the most frequent phenotypes in both the classic and hypermobile forms. The milder variants of the disease are likely to be underdiagnosed due to the phenotypic variability of the disease. An in-depth history should be obtained when hypermobile EDS is suspected in order to assess hypermobility, poor wound healing, easy bruising or bleeding, repeated or voluntary joint dislocations, gastrointestinal issues, muscle injury or a history of hernia in the setting of minor trauma, and other symptoms in order to make a clinical diagnosis.
So the question arises, “Is Ehlers Danlos caused by trauma?”
The answer to this is yes. Sometimes a physical trauma event has been shown to expose subclinical EDS, according to research and anecdotal observation. This is thought to be related to the tissue fragility associated with EDS.
EDS’s neurological and spinal symptoms that might present themselves in these individuals are carcinogenic headache, migraine, cerebrospinal fluid hyper- or hypotension, Chiari malformation, atlantoaxial/craniocervical instability, and atlantoaxial/craniocervical instability. At this time, there are no actual published reports focused on the neuro-ophthalmic symptoms that may manifest themselves in EDS patients following mild traumatic brain injury, which is concerning (TBI).
There is currently no ultimate cure for Ehlers-Danlos syndrome; however, therapy can help you manage your symptoms and avoid more problems from occurring.
Your doctor may prescribe medications to assist you in managing EDS:
- ACETAMINOPHEN (Tylenol, others), ibuprofen (Advil, Motrin IB, others), and naproxen sodium (Aleve) are the most common over-the-counter pain medications used to treat fibromyalgia. Acute injuries are treated with stronger medicines, which are only recommended in extreme cases.
- Blood pressure. Because blood vessels in some kinds of Ehlers-Danlos syndrome are more brittle, your doctor may recommend that you keep your blood pressure as low as possible in order to decrease stress on the vessels.
Those joints that have poor connective tissue are more susceptible to dislocation. According to experts, exercises to strengthen muscles and stabilize joints are the primary treatment for Ehlers-Danlos syndrome. Your physical therapist/doctor may also advise you to wear specialized braces to assist in preventing joint dislocations in order to prevent further injury.
Procedures involving surgery and other techniques
In some cases, EDS surgery may be necessary to restore joints that have been injured by repeated dislocations or to repair burst regions in blood vessels or organs. However, it is possible that the surgical incisions will not heal correctly since the stitches may rip through the delicate tissues.
Following an injury, one’s way of life with EDS
In order to keep Ehlers-Danlos syndrome from becoming a problem, you must take precautions. Here are a few essential precautions you may take to keep yourself protected.
- Make an informed decision about your sports. Exercising in many ways, such as walking, swimming, Tai Chi, recreational biking, and utilizing an elliptical machine or a stationary cycle, are all recommended. Do not participate in contact sports, weightlifting, or any other activity that increases your chance of injury. Try to decrease the amount of stress placed on your hips, knees, and ankles.
- Take a deep breath and relax your jaw. Chewing gum, hard rolls, and ice should all be avoided in order to protect your jaw joint. Close your mouth for a few minutes at intervals throughout dental procedures.
- Shoes with good support are recommended. Wearing laced boots with excellent arch support can assist to reduce the risk of ankle sprains.
- Increase the quality of your sleep. In order to give support and cushioning for aching joints, body pillows and super-dense foam mattresses can be used. It may also be beneficial to sleep on your side.
Following an accident, it has been shown that these individuals require extensive therapy for a lengthy period of time. Major teaching hospitals, which are experienced with the extensive genetic testing necessary for their diagnosis, are where most individuals with Ehlers-Danlos syndromes who already have orthopedic problems are sent for treatment.
Coping strategies and assistance
It is possible that you will experience difficulties at home, at work, and in your interpersonal interactions depending on the intensity of your symptoms. Here are some recommendations that may be of assistance to you:
- Inform your friends and family. Explain your medical condition to your family, friends, and coworkers, as well as your employer. Inquire with your employer about any modifications that you believe will allow you to be a more effective employee.
- Increase your level of understanding. Gaining a better understanding of Ehlers-Danlos syndrome might assist you in taking control of your illness. Find a doctor who has extensive experience in the treatment of this condition.
- Build a support system. Develop healthy and loving connections with family and friends by putting out effort. It may also be beneficial to speak with a counselor or a member of the church. Helping individuals share similar experiences and potential answers to issues through support groups is a valuable service, whether online or in person.
Helping your child to cope EDS
When raising a kid with Ehlers-Danlos syndrome, parents should consider the following ideas to aid their children:
- Keep an open mind. Allow your offspring to convey his or her feelings about having Ehlers-Danlos syndrome, even if this means he or she becomes angry from time to time. Ascertain that your child’s teachers and other caretakers are aware of his or her illness by calling them. Review with them the proper caregiving skills to use in the case of an accident or injury, especially if they are young.
- Maintain a sense of normalcy. Treat your youngster as though he or she were any other child. Inviting others to do the same – grandparents, aunts, uncles, and instructors — is a good idea.
- Encourage people to participate in safe ways. Encourage your youngster to participate in physical activities while setting suitable limits for him or her. Encourage non-weight-bearing activities, such as swimming, while discouraging contact sports such as football. It’s possible that your child’s doctor or physical therapist can provide recommendations.
5 Tips for Taking Care of EDS Wounds after Injury
Here are some pointers for EDS sufferers and those who are caring for minor injuries and illnesses:
- Examine the area for injuries
Patients’ skin becomes extremely brittle due to EDS, and the skin might split, resulting in cut-like injuries. This sort of injury may not bleed significantly, but it may take a long time to recover from its effects. It is critical to check for such injuries on a frequent basis.
- Reduce the number of bandage changes
Skin injuries in EDS individuals take longer to heal than in the general population. According to some research, postponing bandage changes for EDS patients can help the wound heal more quickly. Not that bandages should not be replaced if they get soiled or damaged, but rather than waiting long periods of time between bandage changes may improve wound healing by allowing the wound to heal more thoroughly.
- Remove bandages by soaking them in water
Avoid tearing off sticky bandages, even if the injury appears to be minor. Instead, wet the edges of the bandage with water or oil to release any adhesives that may be present prior to removing it from the skin.
- Scar tissue should be protected
Even after injuries have healed, EDS scar tissue is more brittle than usual and can easily be ripped, resulting in wound reopening in certain cases. Because the skin is so delicate, if the wounds do not reopen, the skin may strain and break. Continue to cover the injured site for many days to weeks after it has healed, maybe with an Ace bandage or a padded bandage, to allow the scar tissue to repair more completely.
- Reduce the likelihood of injuries occurring
Patients are frequently encouraged to avoid hard lifting, contact sports, and high-impact activities in order to avoid injuries to the skin, muscles, and joints, which are common in this field.
- Making preparations for your appointment
Initially, you may want to bring your concerns to the attention of your family doctor, who may then recommend you to an EDS specialist who specializes in genetic disorders.
What you can do before visiting EDS physician
Prepare a list of answers to the following questions before your visit so that you may refer to it afterwards.
- How many different kinds of symptoms are you experiencing?
- Have any of your family members, including your parents, grandparents, and siblings, experienced similar symptoms?
- Has anybody in your family died as a result of a burst blood vessel or organ?
- What prescription drugs and dietary supplements do you take on a daily basis?
Exactly what to expect from your physician
Some of these questions may be asked by your doctor:
- Do you have any excessively flexible joints?
- Is your skin very flexible?
- Do you have a problem with your skin’s ability to recover after an injury?