I sent this letter to Chris Eagle, President and CEO of Alberta Health Services in July:
I suffer from what is generally regarded as a rare genetic disorder; Ehlers-Danlos Syndrome Hypermobility Type (also known as EDS III, or HEDS). I am writing to you today to let you know that it is not nearly as rare as you think. The commonly quoted prevalence of HEDS is 1 in 5000 to 1 in 20,000 people afflicted. Doctors are now trying to make it known that HEDS is clinically indistinguishable from another connective tissue disorder, Benign Joint Hypermobility Syndrome (BJHS). Hypermobility is found, to some degree, in approximately 30% of the population world-wide.
The commonly understood difference between HEDS and BJHS, is that one causes early-onset osteoarthritis, and numerous dislocations, which are painful (HEDS), while the other causes extreme joint flexibility, with little to no ill effects noticed such as in ballerinas, contortionists, circus performers, etc. (BJHS). The more research that is done, however, the more clear it becomes that BJHS and HEDS are opposite ends of the same spectrum, and that they should be treated as the same disorder, as more and more of these people are noticing the extreme pain and co-morbid diseases later on in life, and are having their diagnoses changed.
HEDS causes severe pain. Not directly, but through recurrent dislocations, and subluxations of some or all of our joints. For example; my left hip dislocated, on average, five times every day for over a year, and my left shoulder has only had 2 blissful weeks out of the last 15 years where it hasn’t dislocated at least once per day (and I’m only 25 years old). HEDS also causes recurrent sprains, strains, and other various injuries due to the extreme laxity in our joints, and since we can never seem to catch a break between injuries they can take many months, if not years, to be considered “healed.”
I have had the misfortune of injuring 3 major joints to the point where “normal” people would have surgery to repair them, but since I had been diagnosed with EDS, I was told that surgery is not an option. I am very thankful that the surgeons I saw were aware of the poor wound healing, and the poor outcome of surgery in EDSers, as I have heard of many patients who have had reconstructive surgeries before diagnosis, which have been repeated upwards of 30 (yes, thirty, it’s not a typo) times, as they didn’t work. I have heard several first-hand accounts of patients resorting to complete fusions of wrists, ankles, and shoulders to stop them from dislocating, while also severely limiting their ability to use said joints. The most beneficial surgeries I’ve heard of are tendon and ligament replacements, using cadaver tendons.
Since surgery is only to be considered as a last resort, we have to make do with physiotherapy, bracing, and reduced activity, as the only ways to manage our condition. The problem with that is that since the disorder is classified as “rare” and doctors are taught in medical school that they “will never encounter someone with Ehlers-Danlos Syndrome” (a quote from the very rude gastroenterologist I had the misfortune of seeing ) nobody is properly trained in how to help us. When I sprained my shoulder –while washing dishes- I was referred for physiotherapy. I phoned several physiotherapists in Calgary, to see if any of them had treated anyone with EDS, and I was met with answers that were not the least bit comforting. Most of these professionals deal with very athletic people, as they are usually the ones to sprain their shoulders (quarterbacks, baseball pitchers, and professional swimmers). None of them had ever worked with EDS before, and most were not interested in researching the disorder. If I had gone through with physiotherapy, there is a very good chance that they could have injured me further, by treating me as an otherwise healthy person with an injury.
The main reason I am writing to you today, is that I have found a treatment for HEDS. Through years of internet research, as well as talking to many, many other people with HEDS, I have managed to find Prolotherapy.
“The basic mechanism of Prolotherapy is simple. What most people are surprised to find out is that the body heals by inflammation. In other words, we need inflammation to heal our bodies. It works because it actually stimulates an inflammatory reaction in the body. We inject Prolotherapy solutions into the affected ligaments, tendons, and/or joints, which leads to local inflammation in the injected area. The localized inflammation triggers a wound healing cascade, resulting in the deposition of new collagen, the material that ligaments and tendons are made of. New collagen shrinks as it matures. The shrinking collagen tightens the ligament that was injected and makes it stronger. Prolotherapy has the potential of being 100 percent effective at eliminating pain and sports injuries that are a result of ligament and/or tendon weakness.” (http://www.caringmedical.com/therapies/prolotherapy.asp)
“Traditional Approaches to Treating Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome: Although traditional medicine does not have a treatment for regenerating connective tissue and is therefore unable to heal Ehlers-Danlos Syndrome, several options have been suggested, including exercise to improve joint stability and strengthen muscle; self-management to protect joints from injury, reduce pain and conserve energy; and surgery to correct fractures and dislocated joints. The problem with any of these options is that they do little to strengthen the loose joints in the body and, thus, do not alleviate the chronic pain that people with Ehlers-Danlos Syndrome experience.” (http://www.caringmedical.com/condition_details/Ehlers-Danlos_Syndrome.htm)
I want to let you know that this relatively inexpensive treatment could save hundreds of thousands of dollars spent on unnecessary, and usually ineffective surgeries, while also lowering patients dependency on pain medications, and giving them some semblance of normality. I mentioned that I’ve had 2 blissful weeks without dislocating my left shoulder, and it is because of the prolotherapy injections I received. After just one treatment I am already noticing significant pain reduction, and more functionality.
“ I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER. Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time.
“More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.” (http://b-u-b-b-l-e-girl.blogspot.ca/)
It is at this point that I plead with you. PLEASE raise awareness about this disorder among doctors. All doctors, in every field should get a crash course in EDS, the signs to watch for, the simple Beighton score/Brighton criteria. Ehlers-Danlos Syndrome comes with many co-morbid conditions (approximately 75% have some form of dysautonomia), most of which have treatments. If we were properly diagnosed, we would have access to these treatments.
Please, also, help displace the misinformation running rampant through the healthcare system. This is a degenerative disorder, and it does get progressively worse throughout a patient’s life.
I received a reply from Alberta Health Services.
Here are some excerpts:
“It is clear from reading your letter that you have thought about this matter a great deal and you are well informed on these subjects to a far greater extent than most people, including physicians.”
“Knowledge of hypermobility-specific measures, such as the Brighton Criteria is not common-place in primary care, but would be part of the knowledge-base in rheumatology. Patients with issues of Hypermobility may often present to their family physicians. Often because of the musculoskeletal symptoms, Rheumatologists may be consulted for more advanced forms of the disorder.”
“You have raised concerns about the general level of knowledge about Hypermobility syndromes and the amount of physician education in this area. While Alberta Health Services is not directly responsible for undergraduate or postgraduate medical education, we commit to you to pass on your concerns to those post-secondary institutions responsible for providing undergraduate medical education and post-graduate medical education in programs such as rheumatology and physical medicine.”
“One particular part of your communication relates to the use of prolotherapy. I have consulted with two physicians in Alberta who are knowledgeable of prolotherapy, and one Rheumatologist – a sports medicine specialist with known national expertise in this subject. As you know, prolotherapy is not widely practiced, and it has particular usage, these days, in sports-related injuries, and is often used in the treatment of elite athletes. From what we understand, investigation of prolotherapy in broader musculoskeletal disorders perhaps requires more attention.”
“This raises the question as to whether or not we should ask the Province to look more carefully at the broad field of prolotherapy and musculoskeletal disorders. We will do this as a consequence of the points you have raised and refer your letter to the Alberta Advisory Committee on Health Technologies. This may or may not lead to a provincial-level review of prolotherapy and possible recommendations as to where prolotherapy might fit in the treatment of musculoskeletal disorders. Of course, during this review, any sound evidence that is out there that points to the use of prolotherapy in Hypermobility syndromes will be given prime consideration.”
“In summary, I thank you for your letter and for raising a number of points for us to consider. I will ensure to follow-up with the University of Calgary and the University of Alberta’s undergraduate and post-graduate medical education departments, and I will send a letter to the Alberta Advisory Committee on Health Technologies and raise the issue of the role of prolotherapy in musculoskeletal treatments. As and when appropriate, should I receive further information that bears on the contents and the issues in your letter, I will contact you again. In the meantime, thank-you for being an inquiring and thoughtful patient that helps us examine our processes and our approaches to care with the overall intent of making it better for those who suffer the affliction of disorders such as Ehlers-Danlos, or other variants of hypermobility.”
