Ehlers-Danlos syndromes (EDS) is a group of extremely rare inherited conditions that have a negative effect on your connective tissue. These tissues provide crucial support in ligaments, tendons, skin, internal organs, blood vessels, and bones. Rather than being a single disease, EDS is a range of medical conditions, although several types share symptoms such as stretchy and fragile skin.
It affects approximately 1 in 5,000 people globally, although some forms of EDS are more likely to affect Ashkenazi Jews. While hypermobility and a few other conditions are the most common, some forms of EDS impact a tiny fraction of the population. For example, dermatosparaxis affects a dozen children in the entire world.
A variety of genetic causes are responsible for EDS, many of which are inherited and passed from parent to child. If you have one of the common EDS forms, you have a 25% chance of passing it on to your child via autosomal dominant inheritance as one parent passes on the faulty gene. There is a 50% chance of passing the condition to each of your children via autosomal recessive inheritance if both parents have the faulty gene. A person with EDS can only pass on the same type of EDS to their kids.
The majority of medical treatments involve medication for pain and reduced blood pressure. It is also possible to have surgery or use physical therapy to strengthen the muscles and stabilize the joints. Otherwise, there is little else available, which is why recent research into the possible impact of CBD on EDS is so exciting.
Types of EDS & Symptoms
Hypermobility is the most common form of EDS, impacting around 1 in 20,000 people.
- Hypermobility of joints.
- Extreme fatigue.
- Easily bruised skin.
- Bladder control problems.
- Heartburn, constipation and other digestive problems.
Classical EDS has a bigger impact on the skin than hypermobility, with symptoms including:
- Stretchy and fragile skin.
- Unstable joints that are prone to dislocation.
- Wounds are slow to heal and often leave large scars.
- Organ prolapse and hernias.
Vascular EDS is rare but is also one of the most serious forms of Ehlers-Danlos syndromes. Symptoms include:
- Easily bruised skin.
- Fragile blood vessels that are prone to bulging or tearing, which can result in internal bleeding.
- Unusual facial features such as large eyes, thin lips, and small earlobes.
- Increased risk of organ problems including partial collapse of the lung.
Diagnosis, Outlook & Traditional Treatments
In most cases, doctors can make a diagnosis if patients have stretchy skin, excessively loose joints or a family history of EDS. It is also possible to use genetic testing on a blood sample to confirm or rule out the possibility. Unfortunately, there is no known cure for Ehlers-Danlos syndromes so all a physician can do is help alleviate your pain.
If you are diagnosed with EDS, you will have to adjust your lifestyle and avoid any activities that place stress on your joints. For example, you need to steer clear of contact sports and heavy weightlifting and, for many other activities, it is necessary to wear specific protective equipment. You can engage in lower-risk activities such as pilates or swimming to keep you healthy.
The severe pain experienced by many EDS patients makes everyday life difficult, and the acute nature of the pain means that people living with EDS are at a higher risk of suffering from a mood, anxiety, or psychiatric disorder.
Your physician may refer you to a specialist such as:
- An occupational therapist to help you manage daily activities.
- Cognitive behavioral therapy (CBT) and counseling if you struggle with chronic pain.
- Genetic counseling to help you learn more about the cause of your EDS.
- A physiotherapist to provide you with details on exercises to strengthen the joints, manage pain, and avoid injuries.
For the most part, you will receive over-the-counter pain relievers such as Advil or Tylenol, although you might be prescribed stronger pharmaceutical medication for acute injuries. Blood vessels are very fragile in certain EDS forms, so patients with such conditions may receive drugs to lower blood pressure. You could benefit from surgery but bear in mind that the skin and connective tissue of the affected area might not heal properly.
Is CBD a Breakthrough for Ehlers-Danlos Syndromes?
The short answer is ‘not yet’, but the available research on marijuana is promising. As you may know, the constituent cannabinoids in marijuana, such as THC and CBD, interact with cannabinoid receptors throughout the brain and body. Users of marijuana claim that the herb is capable of easing many symptoms of medical problems including nausea, inflammation, and chronic pain.
As a result, it makes sense that EDS patients, who are in almost constant pain, would look for an all-natural analgesic. The trouble with cannabis is that it is only available for medical use in 29 states. If you live in one of the other 21 states, you would have to break the law and risk imprisonment to use weed for your EDS. Thankfully, CBD is a non-psychoactive compound which means it is legal in almost all states, although there is some confusion in places such as Indiana.
At the time of writing, few medical studies look at the impact of CBD alone on Ehlers-Danlos syndromes. However, several interesting studies show the possible benefits of marijuana on EDS. A 2015 review* of 13 studies by Boychuck et al., published in the Journal of Oral & Facial Pain and Headache, found that cannabis-based medicinal extracts “may provide effective analgesia in conditions that are refractory to other treatments.”
A 2011 study* by Lynch and Campbell, published in the British Journal of Clinical Pharmacology, concluded that cannabinoids were safe and effective in neuropathic pain with no serious adverse effects. Furthermore, the quality of the trials the two scientists reviewed were “excellent” and found that cannabinoids demonstrated a “significant analgesic effect” when compared to placebos.
Although opioids have a positive effect on the pain suffered by EDS patients, it is normal for individuals to develop a tolerance for the drugs, meaning greater amounts are required to attain the same effect. There is a severe danger of developing a reliance on opioids, and such addictions are killing thousands of Americans each year. Meanwhile, hundreds of studies have concluded that marijuana, and CBD in particular, is safe to use with less severe side effects.
There are a variety of ways to consume CBD. You can smoke it in a joint, vaporize and inhale it, dab it, or use a topical lotion or cream. The latter option is becoming a favorite amongst people living with EDS because it enables them to treat a specific problem area. Users have reported rubbing CBD cream on a painful area and feeling relief within a matter of minutes. It is important to remember that everyone’s endocannabinoid system (ECS) is different, so CBD will not have the same effect from one person to the next.
Final Thoughts on CBD & Ehlers-Danlos Syndromes
Evidence that CBD can help those living with EDS is mainly anecdotal at present. This is because most studies into the condition have looked at the entire marijuana plant. We expect there to be numerous CBD-only studies in the near future. Meanwhile, it is a fact that these anecdotal studies are somewhat compelling.
Katie lives in North Carolina and was diagnosed with EDS at the age of 25. She initially used Fentanyl, a drug linked with thousands of deaths. Eventually, she weaned off the powerful opioid with the aid of Blue Ridge Hemp products. Katie uses roll-on essential oil blends to help her manage different symptoms and says that CBD products have changed her life. If you have Ehlers-Danlos syndromes and have found that CBD helps your symptoms, please get in touch – we would love to hear your story!
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