Ehlers-Danlos Syndrome and Its New Treatment with Cannabis

Annabelle Griffin, a six year old girl, loves to go out on fun fairs and play on rides and swings, like any other girl of her age. But the doctors have told her parents that if she just goes out and plays like any other kids, her life may be threatened. This six-year-old child cannot go play with her friends, cannot go to school, or even cannot take part in any sport activities because she is suffering from a serious but very rare disease known as Ehlers-Danlos Syndrome. The disease is also termed as vascular EDS. In this condition, a little knock or slightest touch can lead to severe internal bleeding, which may even lead to death. The disease runs in family and is transferred from parents to offspring.

What Is Ehlers-Danlos Syndrome?

EDS or Ehlers-Danlos syndrome is a rare type of genetic disorder, in which there is a defect in the metabolism of connective tissues that strengthen and support our major activities. There are different biochemical types of connective tissues that plays an important role in the synthesis or stability of different bodily structures such as support of blood vessels, bones and skin. Connective tissue is made up of special type of protein, called collagen and fibrous material. There are six major types of Ehlers-Danlos syndrome:

  • Arthrochalasis EDS
  • Classic EDS
  • Hypermobility EDS
  • Vascular EDS
  • Kyphoscoliosis EDS
  • Dermatosparaxis EDS

What Are the Symptoms of Ehlers-Danlos Syndrome?

Characteristic signs and symptoms of this condition include:

  • Muscle pain and muscle fatigue are the most common symptoms. You may also experience chronic pain, easy bruising, premature osteoarthritis, etc.
  • Highly flexible joints: As the connective tissues are loose (unstable), the joints are also loose or hypermobile and the range of motion is increased. You may even can use your tongue to touch the tip of your nose.
  • Stretchiness of skin: Due to lack of collagen and weak connective tissues, the skin becomes highly stretchable than usual. And your skin will become velvety and soft.
  • Fragile skin: Due to weakened connective tissue, the skin becomes fragile, sensitive to touch and hard to heal wounds. For example, if you have stitches, they are likely to tear and leave a thin, clumsy gaping scar.
  • Fatty lumps: Small lumps of fats may appear around knees and elbows. These fat lumps can be easily detected on X-rays. It should be noticed that the severity of symptoms may vary from patient to patient. Some may develop all of these symptoms while some do not show any characteristic sign other than hyper-flexible joints.

Symptoms of Vascular Ehlers-Danlos Syndrome

Vascular Ehlers-Danlos syndrome is a subtype and most severe type of EDS with distinctive symptoms on the face, like small earlobes, a thin nose and upper lip, and prominent eyes. Patients' skin will be thin or even transparent which can bruise easily, and sometimes the blood vessels can be seen through the skin.

Besides, Vascular Ehlers-Danlos syndrome weakens the arteries of your spleen and kidney, and the largest artery in your heart. If this leads to the rupture of these blood vessels, your life will be jeopardized. What's more, this condition also makes your large intestines or uterus walls become weak or even rupture.

What Causes Ehlers-Danlos Syndrome?

As discussed previously, Ehlers-Danlos syndrome is a rare genetic disorder which is inherited from affected parents to offspring. However, very minor cases of EDS are not inherited, and they can occur due to spontaneous genetic mutation.

The defect in the gene is usually responsible for the dysregulation of collagen synthesis as a result a loose mass of collagen is formed. Collagen is required for the formation of healthy vessels and skin lining. After formation of these loose collagen fibers, the lining of blood vessels will become fragile and may bleed easily. If a person is having vascular EDS, than the chances of transferring this disease to the offspring is almost 50%.

How About Using Cannabis to Treat Ehlers-Danlos Syndrome

There is no cure for EDS. Traditionally opiates and other addictive substances are used in managing this condition, but they are addictive and may cause side effects like nausea, appetite loss, constipation, etc.

  • In recent years, medical cannabis is being used as a non-addictive alternative to traditional painkillers like opiates. Cannabis contains lots of pain-relieving agents and strong anti-inflammatory properties, which is of great help in soothing nerve, joint and muscle pains EDS patients suffers.
  • Cannabis works as a mild muscle relaxer, so it can help decrease the EDS sufferers' risk of dislocation and bruising to a great extent.
  • Persistent insomnia is an annoying symptom of Ehlers-Danlos Syndrome and cannabis can help give you a night's good sleep.
  • Other effects of cannabis for treating EDS include giving relief from arthritis, myalgia, migraines, rib subluxation, etc.

How to Use Cannabis for Ehlers-Danlos Syndrome

For treating EDS, it is recommended to ingest medical cannabis orally through a tincture or use other concentrated form of cannabis. Smoking cannabis is generally discouraged because it may damage your lung tissues. Vaporizer, which is legal in some state like Illinois, is the second-best choice for ingesting cannabis, which allows SED patients to control their intake without damaging lungs.

How to Treat Ehlers-Danlos Syndrome

Special care is required to treat this condition, which can be achieved easily by following steps:

1. Prevent EDS

  • If a person has a positive family history of Ehlers-Danlos syndrome and is planning to start a family, then genetic counselling is the foremost option to prevent this disease from transmission. A trained genetic counselor may help in determining the pattern of disease as well as the risks associated with inheritance in different scenarios.
  • As skin becomes sensitive to touch and fragile, you must turn to mild soaps and sunscreens to better protect yourself.
  • Avoid performing activities which can lead to accidental injuries such as weight lifting and contact sports. Do not place any loose or slippery mat, rugs, or any electric cord on the floor, which increases the chances of falling or acquiring injuries. Keep door way clear of hindrances and clutter.

2. Build a Support System

Developing relationship with individuals who are caring and supportive adds a positive influence in the person's attitude. Join different support groups which may be online help by sharing one's experience of disease and its related solution. Building a support system also helps in counseling and minimizing the risk of depression/emotional issues.

3. Take Medications

Painkillers: Pain relieving medications are prescribed by the physicians to relieve muscle pain. Generally, over the counter medicines are used. In case of severe pain, stronger medications can also be prescribed.

Blood pressure lowering agents: Due to fragility of vessels, the physician may prescribe some blood pressure lowering agents in order to decrease the stress on vessels.

4. Try Physical Therapy

Physical therapy is recommended to strengthen the muscles. As the muscles are easily dislocated in Ehlers-Danlos syndrome, physical therapy is the first option to increase the mobility. Special types of braces are also recommended to prevent dislocation of joints.

5. Try Surgery

Surgery is recommended when the joints are dislocated and are not able to relocate with physical therapy. However it should be noticed that the healing will be delayed due to the weakened collagen fibers.

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