Ehlers-Danlos Syndrome (EDS) is an often-painful medical condition that may develop in those with seemingly superhuman physical abilities in their youth. EDS presents itself in incredibly varied ways and thus, is difficult to describe concisely.
Imagine if — while young, you had Gumby-like yogic abilities with which to amuse your friends. Then, as you grew older, strange, body-wide pain became a frequent occurrence, perhaps moving from place to place in your body. As many as half of those who possess this genetic defect don’t realize it and thus, aren’t prepared for some of the potentially life-threatening complications that can arise. This is particularly true of those with the vascular type of Ehlers-Danlos Syndrome.
It is hard to know how to approach this rare condition. Is it a subject for comedy? Sometimes, it is. Some EDS sufferers have developed a fine sense of humor to help them deal with the inexplicable, unpredictable behavior of their body. Other times it is the cause of major pain and the source of personal tragedy, even death. The importance of an early diagnosis can’t be over-stressed, especially for those with the vascular type of Ehlers-Danlos Syndrome.
Ehlers-Danlos Syndrome is an inherited defect in a person’s ability to produce collagen. What is collagen, you ask? Collagen constitutes 25-35% of the protein in your body. It holds you together. Bad things can happen, virtually anywhere in your body if collagen is to any degree absent and/or defective.
There are a number of related syndromes, which we don’t have time to go into here: Marfan Syndrome, Loeys-Dietz, Ectopia-Lentis Syndrome, and others.
Self-Medicating Ehlers-Danlos Syndrome with the botanical Kratom
Many of those who suffer these disease syndromes have found their way to kratom, an herb that gently produces relief for pain, anxiety, and the depression that trouble them. Kratom, they say is far preferable to the opioid drugs that their medical teams usually prescribe. One big plus for those who will be medicating for an increasing lifetime of pain and often related digestive disorders is the fact that kratom’s primary analgesic alkaloids are about one-tenth as constipative as morphine, for example.
In looking over the treatments for those with Ehlers-Danlos Syndrome — and particularly the vascular type, where blood pressure medications are frequently prescribed to lower the possibility of aortic or other vascular ruptures — kratom may offer a little-known benefit. Kratom contains an alkaloid called Raubasine, which has anti-hypertensive, anti-adrenergic, and vasodilator activities, which may be useful in lowering blood pressure. Raubasine was used as the starting point to create the anti-hypertensive medication, Ajmalicine.
It should be considered that the amount of Raubasine will vary in kratom, depending on the strain and where it was grown. A discussion of this can be found at the bottom of this list of kratom alkaloids. To sum it up, it appears that Raubasine/Ajmalicine occurs in most genotypes of Mitragyna speciosa. Thus, it is wise to figure this into any calculations of how much blood pressure medication and/or kratom those afflicted with the vascular complication of Ehlers-Danlos Syndrome may need.
We might surmise that many of those with this hereditary condition, caused by a defect in their production of collagen, have found employment in the circus in years past as “contortionists”.
As suspected, we found this to be true. As one Ehlers-Danlos-Syndrome sufferer in her mid-forties pointed out, the pain of EDS does not develop until later in life. Thus, most contortionists — blessed or cursed with the hypermobility type of EDS — are not much older than 30.
How common? EDS Foundations says there is one case in every 5-10,000 Americans. Other sources say one in 400,000. Still other estimates exist. It is no doubt hard to decide who has it, if they are even aware of it.
Standard treatment? Depends on the type one has. There are six major types and five or more minor variations. Prescription and OTC painkillers, muscle relaxants, antidepressants, and anti-hypertensives are frequently used to treat the symptoms and complications. Many EDS sufferers are increasingly trying Kratom.
Treatment from a wholistic perspective would include nutritional supplements known to build healthy collagen. Naturopaths teach that everyone needs supplements to support healthy growth, repair, and maintenance of all tissues in a typically nutrient-deficient diet. When Naturopathic Doctor Peter Glidden was asked if genetic diseases could be helped with scientific nutrition, he gave examples of benefits he has seen in the course of his 27 years of clinical experience.
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