πŸ¦“ Ehlers Danlos Syndrome | Diagnosis Discussion βš•πŸ—£
23
August

By Adem Lewis / in , , , , , , , , , , , , , , , , , /


(upbeat guitar music) – Hi all. I’m Jaquie from Chronically Jaquie and this is another video in my Diagnosis Discussion Series. In this video I’m going to further discuss my Ehlers Danlos Syndrome diagnosis. But before we continue,
please keep in mind that everyone’s chronic illness journey is different and I’m going to be sharing my personal experiences,
which may differ from yours or someone you know. Also, be sure to check out the description for the other videos in my
Diagnosis Discussion Series, and helpful links. So Ehlers Danlos Syndrome, or EDS, is a connective tissue disorder in which I cannot
properly produce collagen. Collagen is the most abundant protein in our body that holds
us together like glue. So without it, everything becomes loose and stretchy. Because collagen is found everywhere, EDS is considered a systemic disorder, meaning it affects my entire body. There are many types of
Ehlers Danlos Syndrome, and my specific type is hypermobility. That one is considered
a clinical diagnosis, meaning it’s based on a
doctor’s observations, a patient’s symptoms, and ruling out all other possible causes. There are set guidelines for diagnosing hypermobile EDS, and I fit the criteria. EDS is something I was born with, and I’ve had some symptoms my entire life, such as joint and muscular pain. My parents even took me to doctors for the pain because
it was pretty extreme, but it was always
classified as growing pains when I was a child, even though it was actually something more. Things became much
worse when I hit puberty at 15 years old and I
really began to struggle with my EDS. And although Ehlers Danlos
Syndrome is gaining awareness in the medical community,
it’s not very widely known. So although I struggled with this my entire life and very much so since the age of 15, I
didn’t get a proper diagnosis until I was 20 years old, when I went to Mayo
Clinic and was evaluated by a hypermobility specialist, and then the diagnosis was later confirmed by a geneticist as well. EDS causes me to have hypermobile joints such as this and this. Basically they move
past where they should, which leads to joint pain, popping and misalignments. I even occasionally
experience subluxations which are partial dislocations and sometimes full dislocations of certain joints. All of my joints are affected but my main problem areas are my hips, ribs and neck. The impact EDS has on my neck results in something called
cervicogenic dizziness, which is where my hypermobile neck pinches down negatively on the nerves and then they send incorrect signals to my ears which are the balance centers of your body, which in turn produces a dizziness
feeling I have at times, kind of like I’m off balance or on a rocking boat. My hypermobile joints put extra stress on the tendons, ligaments and muscles connected to them. So I have bouts of tendinitis and I have intense
muscular pain and spasms because of my EDS. My hypermobile joints also pinch down inappropriately on my
nerves, causing neuropathy, which leads to numbness and tingling that I mostly experience
in my feet and hands. That, along with my
overall joint instability increases my fall risk
pretty substantially and I do fall quite a bit. My EDS affects me in other ways as well, such as causing me to have
slightly stretchier skin and skin that’s a little bit more fragile and sensitive than the average person. Collagen also plays a big part in the body’s healing process, so I do have difficulties with healing. For example, a surgery that was supposed to be a three day hospital stay ended up being a 10 day hospital stay. The faulty collagen
also negatively affects my digestive tract,
impacting my gastroparesis and causing absorption issues. Because of EDS I also metabolize certain medications very quickly, such as pain killers and anesthetics. Local anesthesia like Lidocaine has virtually no effect on me and sedation is not very effective either. Many times I have woken
up during procedures and even some surgeries. It takes a lot to keep me under. But thankfully we’ve come to learn what works best for me. Currently there is no cure
for Ehlers Danlos Syndrome, and managing it can be very tricky because there’s not a
one-size-fits-all treatment plan. EDS can affect each warrior uniquely, and not every person will
have every symptom of EDS and the symptoms can vary in severity. So treatment plans are
tailored to the individual. I personally do a number of things, such as resting when I
need to and I’m able to. I also use a heating pad or an ice pack for pain when appropriate. Also, I do safe physical therapy exercises to help strengthen the
muscles around my joints. But chronic pain can pose challenges when it comes to exercise. I have a variety of joint braces that provide extra stability, but I’m meant to use them
as little as possible, only when I really need them, because overuse can
lead to muscle atrophy, causing further complications. So if I’ve just experienced a subluxation or dislocation, the joint brace can help with the recovery period. And if I’m experience a
significant increase in pain, I can wear it for a
certain amount of time. I also have ankle-foot orthotics, or AFOs. These are a type of leg brace and they help by providing more stability and lowering my fall risk when I walk. Unlike my other types of braces, I do wear these most of
the time when walking, because they drastically
improve my safety. Something else that keeps me safe is the use of mobility devices. My chronic pain and
predisposition to falling can make it impossible to
walk certain distances. The more I walk the worse my pain becomes, and the more likely I am to fall and hurt myself. So I have a walker with a seat on it, and a wheelchair for longer distances. I see these things as tools to help keep me safe
and remain independent. In addition to all of this, I do take certain medications, but I cannot regularly take narcotics because of other health conditions. I also have certain pain
management procedures I do to assist with my chronic pain. And if you wanna learn
more about my treatments, you can follow the links
in the description. My biggest struggle with
my Ehlers Danlos Syndrome would have to be the pain. I hope one day medical advancements find a way to fix the faulty collagen and cure EDS. But until then, I manage the best I can and keep moving forward. I hope this video about
my EDS was helpful. And thank you so much for joining in on my Diagnosis Discussion Series. (upbeat guitar music)


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