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Ehlers Danlos Syndrome EDS

Jun 20, 2019


Ron: [00:00:30] Hello and welcome to another episode of podcast DX. The show that brings you interviews with people just like you whose lives were forever changed by a medical diagnosis. [00:00:40][10.4]

Lita: [00:00:41] I'm Lita. [00:00:42][0.2]

Ron: [00:00:43] I'm Ron. [00:00:43][0.2]

Jean: [00:00:44] And I'm the guinea pig. [00:00:45][1.0]

Lita: [00:00:47] Collectively we are the hosts of podcast D X this podcast is not intended to be a substitute for a professional medical advice diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or a treatment. And before undertaking a new health care regimen and never just regard professional medical advice or delay in seeking it because of something you have heard on this podcast. [00:01:16][29.6]

Jean: [00:01:18] Now on future episodes we have many interesting people to speak with about a wide variety of different medical conditions and diagnoses but in this episode we will be discussing a rare set of disorders that fall under the category of Ehlers Danlos syndrome which we will abbreviate from this point forward as E D S. [00:01:39][20.9]

Ron: [00:01:41] E D S or a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hyper mobility that is joints that stretched further than normal, skin hyperextensibility. Again, skin that can be stretched further than normal, and tissue fragility. There are 13 subtypes, each one being diagnosed through genetic testing. The hyper mobile type does not have a genetic marker identified just yet. This type is diagnosed by a physician using something called the Beighton Scale, which includes a variety of tests to give reference to the amount of hyper mobility involved in the patient. The connective tissue of a person with EDS is not structured the way it should be. Some or all of the tissue in the EDS affected body can be pulled beyond normal limits which causes damage connective tissue can be found almost anywhere. It can be found in the skin the muscles tendons in the ligament the blood vessels the organs in the gums the eyes and so on you get the picture. [00:02:58][77.6]

Lita: [00:02:59] That's right. Run. I bet you got that right off the EDS Society website. [00:03:03][4.1]

Ron: [00:03:04] Was it that obvious? I wanted to make sure that we were giving the most accurate definition to the listeners out there. The link for EDS Web site along with more detailed information regarding EDS can be found on our Web site PodcastD X dot com. [00:03:21][16.9]

Lita: [00:03:22] Well now that we know the definition of EDS, I guess it's time to point out the actual symptoms that a person with us experiences. The first is typically joint hyper mobility loose or unstable joints which are prone to frequent dislocations and or a subluxations, joint pain, hyper extensible joints., (they move beyond the joints normal range) and early onset of osteoarthritis. [00:03:52][30.1]

Ron: [00:03:55] Lita, what's the difference between a dislocation and subluxation. [00:03:57][2.2]

Lita: [00:03:59] Well a dislocation is defined as the separation of a human body's two bones from a joint or area where the two bones come together. In time, if treated incorrectly. It can lead to ligament or nerve damage, which will hinder the patient's body movements. A partial dislocation is referred to at times as a subluxation. This is the result of an incomplete separation of the bones that come together at the joints. [00:04:28][29.1]

Ron: [00:04:30] Wow. Either way they both some pretty painful. [00:04:32][1.9]

Lita: [00:04:32] They sure do. Pain is a huge problem with EDS. It can also turn into a chronic early onset debilitating musc, musculoskeletal pain similar to fibromyalgia. Another common issue with EDS is a skin related problems. It's very common to have fragile skin that tears or bruises easily, bruising may be severe. Severe scarring, slow and poor wound healing, even following a surgery, scars can reopen after you think they were healed. Other problems can occur within the body due to lack of collagen and or ligaments support. Things like frequent hernias, digestive problems, mitral valve prolapse, scoliosis, uterine fragility, and gum disease. [00:05:24][51.8]

Ron: [00:05:26] That certainly is an incredible array of symptoms. And this disorder is not curable but it is managed with medication physical therapy and rest. So now that we have laid some of the background for our listeners at home it is time to introduce today's guest who unfortunately deals with EDS on a daily basis. Our own co-host here podcastDx, Jean Marie. Could you please explain a little bit about your journey with EDS?. [00:06:00][33.8]

Jean: [00:06:01] Sure. I didn't know what it was but I've been, but I knew that I had some issues with my joints stability and such for some time. When I was little, I was always very "bendy" and my hip will go out of joint just walking and my shoulders would come out of joint several times, and I've had some other issues but I've had some severe problems with it as well, but most of my issues were later in life. [00:06:30][29.2]

Ron: [00:06:32] So the first symptoms that when you were much younger you said about your hip. [00:06:37][5.3]

Jean: [00:06:38] Well I would say that although I recognize that there was something going on I didn't understand what. How complex and difficult the situation was and that I had EDS until much later in life, in my 30s. [00:06:52][14.3]

Lita: [00:06:53] Is it common for people with EDS to get a diagnosis of fibromyalgia. [00:06:57][3.3]

Jean: [00:06:58] Sure. I mean you have joint issues and joint pain is often common in eds. So you may be diagnosed with fibromyalgia but it's actually a connective tissue issue when it comes to eds and you could also have an issue with your vascular system which is a subset of eds. [00:07:18][19.5]

Lita: [00:07:18] Okay. And how do gastrointestinal problems. Irritable bowel or Gerd. How do those play a part with EDS? [00:07:27][8.2]

Jean: [00:07:27] Well since your gastrointestinal system is comprised of connective tissue it can be affected by eds. So in your nerves are also surrounded by connective tissue. So since your gastrointestinal system works on a umm [00:07:43][16.0]

Lita: [00:07:49] The pulsing of the muscles that move the product through the gastro system right? [00:07:55][6.0]

Jean: [00:07:55] Right. That's all influenced by your nerves. And it's not something that you can control. It's an autonomic function and it's controlled by your nerve. So if your nerves are affected by your eds then your gastrointestinal symptoms are affected by that as well. And did I mention brain fog. I think brain fog is a part of eds. [00:08:13][17.7]

Lita: [00:08:13] yes I know I know. [00:08:14][1.0]

Ron: [00:08:16] Well I know your symptoms have changed over the years. This is based on surgery's medication changes etc. etc.. How would you say that eds affects your lifestyle right now. [00:08:27][11.6]

Jean: [00:08:28] Well I have to make different modifications and accommodations for eds. Yes I have to take into account that my. For example I my hip might come out of joint and I do utilize different. Things to try to reduce the number of incidents I have. [00:08:45][16.7]

Lita: [00:08:46] OK. Well since this is you know this is EDs Awareness Month as you know. Are you up for that EDs challenge that they've been talking about. [00:08:54][8.1]

Jean: [00:08:55] Nope [00:08:55][0.0]

Lita: [00:08:58] (laughter) Good. Let's do a lightning round. I'll ask the questions and you'll have 15 seconds to answer before I go on to the next one. [00:09:04][6.4]

Jean: [00:09:05] Great. [00:09:05][0.0]

Lita: [00:09:05] . Ron you'll keep time. You're ready. [00:09:07][1.9]

Ron: [00:09:08] I Certainly am. whenever You're ready. [00:09:09][0.9]

Lita: [00:09:10] Jean said she's not ready. [00:09:11][1.5]

Ron: [00:09:12] Well you're ready Ready or not. [00:09:13][0.9]

Lita: [00:09:13] That's right. OK. Question 1 What type do you have. [00:09:17][3.5]

Jean: [00:09:17] Hyper mobile. [00:09:18][0.3]

Lita: [00:09:19] And when were you diagnosed. [00:09:19][0.8]

Jean: [00:09:20] Several years ago before my cranial cervical fusion in New York. [00:09:23][3.1]

Lita: [00:09:25] OK. Do you have any comorbilities. [00:09:26][1.4]

Jean: [00:09:28] Yes I have pots which we discussed on a prior episode. I get migraines. I have several hernias. I have an issue with my gastro parasen, paracentesis there say that three times fast. I have thyroid disorders tinitis in my ears cranial cervical settling and cranial cervical instability which has been repaired with a number of different titanium accessories, syncope is lipo edema, latex sensitivity I get PVCs with my heart. Now I have celiac disease and I have difficulty swallowing just to name a couple of related issues. [00:10:05][37.7]

Lita: [00:10:06] Hey Ron I think we have a client here that we can use for a lot of future podcasts [00:10:10][4.1]

Jean: [00:10:11] Oh no no no no. There are many other people that want to get on the show. [00:10:14][3.3]

Lita: [00:10:14] OK. All right. Question number four do you have any mobility aids that you use. [00:10:20][6.0]

Jean: [00:10:21] I do. There are some are unusual but it's difficult. For example for me to squeeze a bottle. So when it comes to toiletry products and things of that nature I use a pump. [00:10:31][9.7]

Lita: [00:10:31] OK. [00:10:31][0.0]

Jean: [00:10:32] Because that makes it my life much easier and I join up to worry about my fingers going out of joint. I also make sure that I you know I have trecking polls to assist when I'm walking and if need be I also use a wheelchair when I know when that comes. [00:10:46][14.6]

Lita: [00:10:48] To much walk. [00:10:48][0.5]

Jean: [00:10:49] And yet when walking becomes too much I wear very comfortable shoes that offer a great deal of support. And I just try to take it easy and rest. [00:10:58][9.5]

Lita: [00:10:59] OK. What do you use for pain management. [00:11:01][2.1]

Jean: [00:11:02] Anything I can. I've taken everything from fentanyl to oxycodone and I have recently submitted my application for medical marijuana for the state of Illinois. So I'm looking forward, looking forward to trying that as well. And then I also use things like distraction music. I'll read books listen you know watch movies spend time with my family spend time in the garden and I try to you know alleviate my pain through other techniques as well. [00:11:33][30.7]

Lita: [00:11:34] And pet therapy. [00:11:34][0.8]

Jean: [00:11:35] And pet therapy yes. [00:11:36][0.6]

Lita: [00:11:36] Can't forget Buddy and Gi.Gi.. [00:11:37][1.0]

Jean: [00:11:38] Nope. [00:11:38][0.0]

Lita: [00:11:39] Have you had any surgeries do to eds. [00:11:41][1.8]

Jean: [00:11:41] Yes yes. My , when walking my ankle. the tendons and ligaments tore off my ankle. So they had to be repaired. And I have not yet had my other ankle repaired but there is a similar situation there. And I also had a cranial cervical stabilization procedure to try to keep my neck stretched to its full full height. And it added a nice little inch to my height. [00:12:08][27.0]

Lita: [00:12:09] OK. Have you had any hospital stays. [00:12:11][1.9]

Jean: [00:12:11] Yep. One or two variety of reasons. [00:12:14][2.5]

Lita: [00:12:14] What types of specialists do you have. [00:12:16][1.5]

Jean: [00:12:17] I have a specialist for everything from my vision. So I have a neuro ophthalmologist straight down to my toes and I have an orthopedist that works specifically on ankle repairs. [00:12:31][14.1]

Lita: [00:12:32] OK. What is your funniest EDS story. [00:12:34][2.8]

Jean: [00:12:35] Before I knew I had eds I would entertain people by moving my hair around and it looks like it's a wig because I can move it so much because of the flexibility. So it's a little bit unusual. [00:12:46][10.4]

Lita: [00:12:47] Mm hmm. Excuse me. What was your worst doctors experience. [00:12:51][4.1]

Jean: [00:12:52] I had an orthopaedic surgeon told me that my shoulder blade was fine because I hadn't fractured my clavicle which I didn't realize in order to hurt your shoulder blade. You have to fracture clavicle but I don't think that's the case. And indeed I needed extensive repair to my shoulder blade and had to have two major procedures for that. [00:13:11][19.0]

Lita: [00:13:11] Okay. And what was your best doctors experience. [00:13:14][2.6]

Jean: [00:13:14] I have amazing GP's that juggle all of the specialists that I have and they're able to consolidate everything and handle all of my new and unusual conditions. [00:13:29][14.0]

Lita: [00:13:30] OK so you say the gps would be the best. [00:13:32][1.9]

Lita: [00:13:33] Yes. OK. Do you consider your she's doing pretty good on time. [00:13:36][2.8]

Ron: [00:13:36] She is. [00:13:36][0.3]

Lita: [00:13:37] Do you consider yourself. [00:13:37][0.6]

Jean: [00:13:38] Since I forgot where I put my my notes. This must be an off the cuff. Yeah. Yeah. [00:13:43][5.0]

Lita: [00:13:43] Do you see. Do you consider yourself disabled. [00:13:45][1.6]

Jean: [00:13:46] No. No. I may be differently abled. [00:13:48][2.3]

Lita: [00:13:49] Have you experienced ableism. [00:13:50][1.5]

Jean: [00:13:52] is that like Cain and Abel ism or. I don't know what it was. [00:13:55][3.2]

Lita: [00:13:55] This was one of the questions on the I'm assuming a challenge. [00:13:58][2.6]

Jean: [00:14:00] I don't know. [00:14:01][1.1]

Jean: [00:14:01] I do know that when I'm sitting in using my wheelchair sometimes people don't look at me or talk to me they'll talk to whoever is assisting me at the time and I find that disconcerting and that I've had issues in certain situations where I can't speak to someone and it does because it's the desk is so high and when I'm going on a tour of a museum it's difficult because you know you're trying to see everything. It's just there's challenges in that regard but nothing too horrific. [00:14:31][29.4]

Lita: [00:14:33] What is something that you wish everyone understood about eds. [00:14:36][3.6]

Jean: [00:14:37] oh... About Eds. [00:14:38][0.6]

Lita: [00:14:38] Yes. [00:14:38][0.0]

Jean: [00:14:38] Yeah. You say because you really do have to narrow it down that you can't necessarily see what's wrong. So if I am parking in utilizing a handicapped parking place it might be because my hip has popped off the day. And you might not be able to see that because you know you can't see that and you can't see other issues. But I do need assistance from now, you know every now and again and. Yeah. So just you can't always see what's going on with somebody. [00:15:04][26.1]

Lita: [00:15:05] So it's an invisible illness. [00:15:06][1.0]

Jean: [00:15:06] It can be. It can also be a very visible illness because I do have quite a few scars. And it takes me a very long time to heal. So in that regard you can see it. But yeah most of the time you cant tell what's going on. [00:15:18][11.3]

Ron: [00:15:18] From the naked eye if people don't get you in a wheelchair they think you're fine. [00:15:21][2.9]

Jean: [00:15:21] Yes. Yes and I could very well be passing out or having a syncapal episode at any moment and that's very frightening. [00:15:29][8.0]

Lita: [00:15:31] True true it scares the heck out of me I know. [00:15:33][2.5]

Lita: [00:15:34] Sorry Mom. Yeah. Yeah. If you could rid yourself of one EDs symptom which would it be. [00:15:40][5.9]

Jean: [00:15:42] I guess the gastrointestinal complications I've been told that I should really have my colon removed and that's not something I'm jumping for joy about so certainly I'd want that corrected. And I guess any of the. [00:15:55][13.3]

Lita: [00:15:56] No one one, you see how, she's that, now she's losing the trick. [00:15:59][3.5]

Jean: [00:16:00] Well yeah. All right all right. Any. But yeah. OK. [00:16:02][2.6]

Lita: [00:16:03] Just one. Well that wraps up today's session. If you have any questions or comments related to today's show you can contact us at podcast D X at yahoo dot com through our Web site podcast D X dot com at our Facebook page at Instagram or Twitter. [00:16:22][18.8]

Ron: [00:16:23] And if you have a moment to spare please give us a five star review on I tunes podcast app. [00:16:29][5.6]

Jean: [00:16:30] And thank you to all of our followers on Instagram. We really appreciate the feedback. And on Facebook I love all the feedback there as well. And the Twitter followers too, have to give you guys a shout out into all of our other podcasters out there who have given us praise and assistance and encouragement. We appreciate you guys. [00:16:49][19.5]

Lita: [00:16:49] Yes we are. We're. moving... (forward) [00:16:49][0.0]