Seeing EDS patients in my genetics rotation!
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- Опубліковано 19 вер 2024
- As a genetic counseling student at Mount Sinai, I have spent the last two months in cardiovascular genetics clinic, seeing patients with EDS, Marfan syndrome, cardiomyopathies, and so many other cardiovascular disorders. In this video I talk about my experience seeing patients with my own disease: hEDS.
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The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
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WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-dan...
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org...
❤️ cle.clinic/2p1...
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
#geneticcounseling #rotations #EDS
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#geneticcounseling #Eds #genetics
I'm so proud of you!! Honestly, we need more people like you in the healthcare system!
Thank you!! 🥰
agree 😊
@@IzzyKDNAif someone is negative for the genes, but needs evaluation for heds what type of specialist do you recommend?
I got officially diagnosed with hEDS last week. I found your videos years ago before I even knew about EDS and I wanted to thank you, truly. You've made my diagnosis a lot less scary to deal with ❤
Glad to see got into a profession to help patients like us. Theres literally currently NO Geneticist seeing adults here in my state. Which is absolutely absurd. I have had soo many issues getting any assistance with my hEDS here. Currently on bedrest from a full hip dislocation.I too have POTS and have severe MCAS so I started reacting to Liquid IV and other electrolytes solutions. So I started making my own. I do coconut water for potassium, celtic sea salt for minerals, and camu camu for natural vitamin C.
Check out TMS Dan buglio he's got someone eds fully recovered.ime awaiting be tested
hEDS runs in my family, and three of my six cousins died of aneurysms. Many doctors believe that only vEDS is dangerous, unfortunately.
I have heds awaiting genetic testing what age were they sorry to hear this😢lost my mum to severe ms heds few no this to and great grandmother to brain tumour
@@Truerealism747 hEDS doesn't have a genetic test yet, so any testing you get will be to rule out the other 12 types. They might screen you for related connective tissue disorders as well.
Sorry about your mum. :(
So great to see you again. What does life look like for you with the demands of school while dealing with your own health struggles? Thank you for taking the time to share your knowledge with others. May God bless you. ❤
It goes back and forth between being very hard and being not-so-hard! Like some weeks I feel great and as long as I don’t push myself too much ill feel fine the next day! But when things like my autonomic nervous system or my neck flare, it does get pretty hard because I don’t feel well enough to really do much work. It’s a balance, but it somehow works out in the end, as long as I communicate with my supervisors and program directors if things have been flaring
I see you on other instagram sites encouraging others who are going through the same struggles. I am so impressed by what you & others are able to accomplish through your strength.
Oh my god!! I hadn’t visited your channel in a while and came back to see this - look how far you’ve come in this journey! Super excited for you and your patients!!
I am really proud of you. I don’t know if you might see this comment, but I also suffer from this syndrome and I live in Egypt, and although there are many obstacles, it is worth it. We try things that we did not enjoy. Once again I am proud of you 👍👏👏
Hope all is well. Haven't seen any vids from you in a bit. Love them all!!!
First I just want to say I’m so glad you’re doing this cuz we need so many more people with lives experience of things like this. It will help so many people get better care ❤ I also just wanted to mention that the few times I’ve had medical practitioners who disclosed they had similar conditions to mine it gave me hope and decreased my anxiety so much. I knew they understood the struggles and it also gave me hope that one day I could be healthy enough to do something like that and help people like me
You amaze me every single video. I hope you get to do a video just talking about what you have added for self care during this challenging time for you. Congratulations on everything you are doing… wow. Love that you are on our team xoxoxo
Great to see you!! Congrats on school!!!! It must be fascinating. When I worked as a drug and alcohol counselor it definitely was a benefit having a background in what my patients had.
Nice to see you on UA-cam again. Your videos have always been super informative and they got me to look into hEDS and HSD. And after having symptoms for over 17 years, I finally got a HSD diagnosis about a week ago. Thanks for your great work!
I'm pretty sure I have G-HSD, but my PCP doesn't do hyper mobility testing. Just wondering how you went about getting diagnosed? Thank you!
Hey Izzy :) thank you for sharing your work and experiences with us. Your videos are always super interesting and helpful, it's thanks to you that I have found out I have hEDS. I finally got the diagnosis this month at 24 yo and I'm so relieved to have finally found an answer!
Happy 25th birthday Izzy!! 🥳 Hope your day is great!
I loved this video! Your rotations sound fascinating! Had I known about EDS at a younger age, I think I would have persued a similar field. Thanks for the update, keep up the good work!
Omgg the new vitassium range seems amazing but i looked at the ingredients for the fruit punch flavour and there is Grapefruit in it! So PLEASEEEEE Be careful drinking that flavor when on medications >.
Not sure if this was in your realm but I had Dr. Caton in Queens perform a cerebral venogram back in February! So thankful for that team.
You are a very intelligent woman you would be a great nurse you are such a caring person love you and your intelligent videos
It’s great to hear from you. I’ve been hoping that you are doing well. Yay! 🥳❤️
Don't worry about YT, concentrate on your health and studies and enjoying those as much as possible. I'm sure you'll find working very rewarding and fulfilling.
I was thinking of you the other day! So happy to see you!
🥰🥰🥰
That was all wonderful to hear and I agree that you shouldn't identify with your patients in order to maintain that professional raport. However I cannot tell you how much of a relief it was for me finally finding a doctor who specialized is H-EDS to diagnose me and finding out not only does she also have a mild form of H-EDS, but she was able to refer me and my entire family to a physical therapist that also has it. Just knowing that my doctor really did understand the years of frustration, dismissal and pain with no explanations made me instantly trust her more and feel like we already had a raport due to plausible similar struggles. So I would say that allowing your patients to know your own H-EDS status wouldn't detract from those appointments and may make them go even smoother.
I would love to have that experience for my hEDS kiddo, it would be such a huge relief!! So glad for you and your family.❤
@karlamalcolm9249 sadly I don't have insurance anymore and can't afford to see that physical therapist, but it helped my kids get some things under better control and understand their bodies better.
What an exciting rotation. I’m thrilled for you and the patients.
So I’m in the hospital, again and they don’t know what to do with me. Question, would an AI program that goes through medical records to identify possible conditions that the Drs don’t know about? Just a suggestion. Because every Dr I have currently, doesn’t know much about EDS. I see a NP February 23 but I am 45. I really don’t want anyone to suffer this long without diagnosis.
You make me feel so hopeful for the future.
I have both familial DCM and EDS! This video was very interesting thank you!!
Wow, what are the odds?? I hope your family has a good doctor or clinic who is helpful with managing the DCM ❤️
I don't think words can communicate how on incredibly helpful thisvideo has been ❤
Thank you so much!
Glad to see you doing well. So thrilled, keep up the hard work! So many need your help and support out there.
Did they ever figure out an hEDS gene!?
I hope this drinks will be available in Europe soon😅, I need this🥰
Shalom from Israel. I watched Ammy Lee Fisher r.i.p journey with that sickness and I see that your case is different if I may say easier because she was on tpn and suffered so much but she was, she is angel. I wish you strong health and light in your Soul and ❤.
I wish where I live there was more educated people on my disorder (EDS, pott’s, and I may have gastropreisis), I’ve learned so much from you rather than health professionals in my community. Doctors don’t believe in it here and when I go to the hospital and go tachycardic they say it’s a panic attack when I know it’s not and they do not give me proper care, same with my pain. It’s sad.
Ps: my doctor is great but it’s other professionals that have not diagnosed me
@@irelynn1903are you in uk I've had to find specialist so hard but pain is my worst symptom I had pots 2006 2008 some of my symptoms have changed others have come muscle pain worst mcas I believe from autism heds
I am so glad I found you on UA-cam. You seem like a great source of information. I just recently got diagnosed and so many puzzle pieces are starting to come together, I think.
I'm in the same ballpark theorizing that many of the subtypes of EDS are more distinct from each other than similar and should be classified differently. I have cEDS, but I have way more symptomatically and phenotypically in common with my buddy with vEDS than I've ever had with people who I've met with hEDS, and I think it comes down to cEDS and vEDS being caused by collagen variants and hEDS/HSD (which I agree there's a lot more overlap there than the 2017 criteria narrows it down to) likely being the result of a variant of a whole other type of connective tissue that's flying under the radar.
Hello, I hope you're safe over there? I hope this year brings happiness, prosperity, and love all over the world, I would love 💚us to be good friends in honesty and in trust if you don't mind. I'm Doctor Christopher Johnson from San Francisco, California, where are you from if I may ask?❤
So happy for you, pop in and say Hi when you can❤
When it gets hot out, I make my own electrolyte drink, with salt, baking soda, sugar and flavor (lemon juice or sometimes a packet of plain Kool Aid in the envelope). Is there an advantage to purchasing a pre-made electrolyte mix? I mean, beside the convenience, and of course, the good taste. Does anyone have an opinion on this? Lastly, I'm really glad you got the sponsorship for your channel. And thank you for taking the time to create such upbeat, fun, and informative content!
I have a FBN1 mutation and being evaluated for Marfan. I’m not a typical presentation
My father had WPW and also 4 aortic aneurysms. It is him that I inherited this from 😮
Hi Izzy! We've missed you.
My sister got diagnosed with EDS a few months back the hyper mobile version
Wow! So proud of you.. congrats, keep up the good work.. 🎉❤
It would be amazing to be your patient one day! Excited for you :)
Izzy, my fam history consists of unknown cause severe early arthritis, (mom had hip replacement and knee by 50) bowel problems with severe constipation. Joint dislocations with my sister Rox being the worst. She just dislocated her shoulder but had ankle surgery and her knees pop out. She also had a heart murmur on her paperwork in the past. We used to be SOOO flexible and i liked to do tricks like sit with my legs behind my head, play with my elastic thumbs and freak people out. NOW my thumbs hurt and FREQUENTLY pop out of place doing things like turning lids or grabbing things. If i squeeze my wrists they move alot and clunk. My neck is very subluxed. I have a foward curvature now but if i crack it myself it doesnt hurt.
I have had horrible bladder control and needed a note from doctor as a young girl. If i try to hold it i will have the most PAINFUL bladder spasms. I get migraines. I have always had a problem with a racing heart. Lately, my worst symptom has been FALLING TO THE GROUND. When i do i feel weak and my legs have no strength and i go to the floor. I can no longer stand up and i have to crawl or just fall over flat. If i get GATORADE and chug it. I immediately feel better. The other attack i get is dizziness and extreme nausea and vomiting which is HELPED by salt. Both of these are worse after my HEAVY PERIODS.
so...i dont even think id qualify with a beighton score anymore even though when i was younger i would have passed with flying colors.
My family problems are compounded because my great grandparents from Poland were first cousins.
My youngest son has crazy stretchy skin, can rotate his femur completely around so his foot can rest on his chest. He is very bendy.
My sis, her daughter and him can all do reverse namaskar. We all have flat feet and my feet are super painful.
My sis daughter is 4, hypermobile and terrible stomach pain at night. I talked to her about hEds and abdominal pain.
So shes having her daughter going through a work up. My sis is a nurse manager.
My son was constipated even as a baby and has alot of problems with bowel and bladder and also dental problems. Severe cavities and crowding 😢. I always needed extra lidocaine and so did my first son. My youngest son seemed to still be in alot of pain even after anesthesia and he was still bleeding 3 days after the procedure. Not too badly though but still bleeding. So it scares me hes not getting adequate relief and i never heard of needing extra anesthesia until it happened to me as a kid
My moms one brother died of internal hemorrhage, my mom almost died of internal hemorrhage with placenta abruptia and another problem later on. My other uncle died of a heart condition.
My Aunt died from complications but her life consisted of pain, steroids and a myriad of doctor visits with no answers. Her birthday was yesterday and she died miserable and in pain.😢.
I KNOW something has plagued our family for years and now im worried about my two youngest. Especially my youngest.
I am pretty good at explaining things to doctors but i dont want to feel dismissed. Im a nurse. I also dont have time for eds for myself as i am a single mom, nurse and patient aide and i do homeschool. I do want to take care of my boys though. I had no idea about POTS until i watched your video. It freaks my kids out but i tell them im all right momma needs gatorade or Ramen.
I DONT like extra salt but my mother puts salt on bacon and sweats like crazy.
Anyways if you want to contact me that would be great. Just send me a note on here.
Awesome to see you back! Way to go with your schooling!! Have you met any patients who have EDS and Epilepsy yet? I have met some other people who have both, and I thought that was a neat coincidence! I’m not the only one that has them which makes me feel less alone. I have read where the same genetic mutation that causes Classic EDS ( the type I have) is the same one that causes Osteogenesis Imperfecta which is what my mom and my sister have.
@@dr.christopherjohnson3955 here in the United States.
@@dr.christopherjohnson3955 I don’t share my personal information with anyone but my CLOSE friends and family. Why do you need to know my personal business?
Enjoy all of your videos! I always learn something new!
welcome back on youtube izzy
Omg so so happy to see you again
❤️❤️
Hi. I am also clEDS. I learnt it two weeks ago. I did not watch all of your videos yet. Thanks for sharing. My question... Do you feel fatigue? Thanks a lot.
I’m in Florida who can I go see was just recently diagnosed by my pain doc at 50 years old. Been suffering all my life.
Great to see you back with another video! Speaking of vascular issues.....Do you have any sources of info on superficial venous insufficiency and hEDS or chronic venous insufficiency and hEDS? Any info is super appreciated! 🙏💙🦓
So good to see you back ! How do you deal with your bad days and school ? Does the office work with you when your having flares ?
I guess what I’m asking is . Like if you need one of your braces at work , is that an issue .?
Welcome back. I have eds3 and pots ,svt, congestive heart failure, and Factor 5. Im also with the Pots. I can't drink salt drinks because i can't tolerate salt, so what do I do when I have orthopedic? thank you for helping all of us by being on the front lines. You're an inspiration.
Thank you! You do excellent work :) Nice to see you again- don't be a stranger ;) XO
❤️❤️
Honestly, speaking as someone who has yet to see genetics about EDS diagnosis to rule out other types, I don't think it's necessary to disclose your diagnosis to patients just because it's the same. In some ways it would be cool because it's like "oh my god they really get it" but you can get similar levels of comfort just from being a good advocate for your patients as any type of doctor without sharing that information. Plus, I'd hate for it to backfire on you and make a patient think you only see the signs because you have it. But that's just my two cents lmao I'm glad to hear school has been going so well for you!
Also, does Mount Sinai do genetic testing for all EDS types? My rheumatologist mentioned a place in NYC or a place in Albany and Mount Sinai was the first to come to mind 😆
Bravo and Congratulations, Izzy! You are doing fantastic work! As I read in The Body Keeps the Score: research is me-search. :D Thank you for sharing your learning, knowledge, and expertise with us fellow EDS brothers and sisters! Two questions, can someone come to you or your clinic versus say Mayo or Stanford? (Personally, I've not heard great things about Mayo from EDS patients/friends so I've been holding). And secondly, since we don't have all the markers yet, would you say depending on the concern/type to continue waiting for testing?
Many people with vEDS and loeys dietz come to our clinic for continued care, and they also often see another cardiologist that we work closely with who isn’t specifically a genetic cardio specialist. But with hEDS, patients usually come in for a diagnosis or for some sort of guidance (like a referral to a Dysautonomia clinic or something) but we don’t usually see hEDS patients continuously unless something comes up for them. It’s also an outpatient clinic, though if one of our patients was hospitalized I’m pretty sure the doc at my clinic would be partially helping out. Idk if that really helps answer it!
Wait sorry can you clarify the second question hahaha.
have you ever heard of hypo or hyperkalemic periodic paralysis or Andersen tawill syndrome? there have been studies about eds pots and periodic paralysis
I would be so happy for someone to tell me they also had hEDS. It would make me stl much more comfortable knowing they "get it". Thats why I love yours and Jeannie's stuff so much!
I have a question, but I doubt youll probably see it/have time to answer, but it's worth a try!
Have you noticed any EDS phenotype that seems to cause symptomatic vascular compression syndromes? I have MALS, and getting tested for more. I also have a teensy baby splenic artery aneurysm, and many EDS symptoms Ive seen in multiple types of EDS, as do my family, just not as severe. I only just meet hEDS criteria, but its obvious I have a type of EDS. I'm waiting on genetic testing to come back, but I doubt it will come back conclusive, and I'll keep my hEDS diagnosis. I'm just curious if you saw or have heard of many people with vascular compressions + EDS? There seems to be many EDS people in my MALS group on FB, but they all have different types clinically/ genetically diagnosed.
Hi Izzy! I'm so happy to see your update! Out of curiosity, do you tell people about your story if someone asks how you got interested in this field? I am also in school in a field that I was a patient of and it's a very small, specialized allied health field, so I find a lot of my patients will ask me about how I got interested in this field or even interviewers will often ask, and the truth is was that it was through my journey as a patient. What do you tell your patients if you don't disclose your personal story? I'm interested and looking for alternative ways to truthfully answer the question. :)
Such a good question!! I usually don’t tell them my story unless it’s someone I feel I’m going to have like a continuous relationship with, such as another genetic counselor that I really like. I usually say one of two things, and honestly both are true. 1. A close family member of mine had genetic counseling and felt like it was the most perfect job for me, and told me about it. And I started looking into it and realized it was amazing. 2. I love medicine and especially genetics but didn’t want to be a doctor. I heard about genetic counseling and just fell in love with the idea of it.
@@IzzyKDNA Thanks so much, Izzy!
I love your videos because i can relate so much thanks :)
If someone doesn't officially test for having POTS but has clinical daily symptoms of Dysautonomia and tachycardia, how do you decide how much salt to take? Does it fall to trial and error figuring this out on your own? It just seems like physician's we have seen tell you you're fine and go home.
What are the first steps one takes to get evaluation? My GP won't even look at my symptoms list, and because I have fibromyalgia, every rheumatologist I've been referred to has turned me away. Im frustrated enough with how my fibromyalgia is being treated (it isnt) and I genuinely believe hEDS runs in my family, and is having a negative impact on us, but I cant seem to get even the first steps toward testing. I've scheduled to start seeing a new GP for various reasons, but im worried he will ignore my hypermobility in the same way.
Hi Izzy I am about to graduate with a bachelor's degree in premed and am considering doing genetic counseling school instead of medical school. Is there any way I could talk to you about your experiences as someone who also had hEDS?
I've suspected that I have hEDS for a little while now. Then last month I had an artery rupture. This is not the first time I've ever had a traumatic hemorrhage. Can someone have hEDS and vEDS?
How did you not (or maybe you did) have med student disease / think you have whatever you were learning that week, or have panic attacks learning about your own disease?
I don’t know how to ask this, but like does it ever bother you psychologically studying EDS while having EDS? Because like for me as far as I know I only have POTS, but sometimes it’s hard for me to study the cardiovascular system or even research POTS because I get really anxious sometimes reading about more severe cases than mine like “omg is this my future”
Great question! I really truly thought I was going to be overwhelmed, but it wasn’t nearly as bad. For me, the anxiety is more that I hate thinking about it so much, and I recognize that EDS is a part of me but I can’t fathom having it be every single thought. And that makes me anxious. In appointments, for the most part, I really wasn’t thinking about my own experiences, which is great! When I’m “studying” EDS, it doesn’t overwhelm me at all. But like if I were to see EDS patients every day for years, I do worry that it’d be a lot for me. But I wanna help Eds patients so badly 😭 such an internal struggle hahha.
My ideal would be seeing EDS patients once a week maybe
How is your knee now? Im 72 hours into recovery from the same knee operation you had and it feels impossible. I was home same day
I just got a clinical diagnosis for hEDS and am being sent for genetic testing in case it is one of the others
So good to see you! No Dx yet, but should I check in with a cardiologist? My clinic doesn't do EDS assessments anymore, and genetics counseling is only for children or for adult cancer. My PCP is willing to provide a referral if I find an outside clinic, but I haven't had the spoons - I am worried about aorta complications, though, bc my dad's mom had aorta surgery, my brother has had some heart issues, and my dad recently started blood thinners for atrial fibrillation. (EDIT: aorta ultrasound came back with no concerns. Still on the EDS assessment waiting list, for more than a year now.)
How are you going on
Is there a genetic test for EDS (hyper mobility type) ?
the genetic marker for hEDS hasn't been found yet but the research continues. courtney gensemer is pretty involved in this and there have been a few recent articles on the progress of things, if you're inclined to look that up
Great question! Following!
@@martinenotmartini9935 thank you I will look it up
I miss you!!!! Are you coming back soon??
YESSSS. Editing videos right now!!!
@@IzzyKDNA awww that makes me so happy!!! Can't wait to see them!
Do people with HEDS have veins that role or when you go to get a blood test it’s very hard to find a vein or get a vein?
Hello pretty lady! ❤
I have a question if you don't mind. Do you also have reactivated EBV?
Thank you. Lotsa love & hugs 🤗
So genetically speaking if have EDS is my brother more likely to have Marfan's? Like are they related? My mother won't get him tested but he meets so many of the criteria
Nope, he wouldn’t be more likely to have Marfan. They are two different conditions, each with a different genetic basis, so having one would not increase the likelihood of having the other in the same family. But, if you have EDS and your brother has some features, it’s possible he also has EDS and just presents very differently from you. Hope that helps! 🥰
@@IzzyKDNA helps so much!! Thank you for your content. It's no understatement to say that you have changed my life!! ❤️❤️
@@iwcnv always happy to help!! I know how confusing and complicated EDS and other connective tissue disorders are, even for doctors!
That drink is a big no as it contains a corn ingredient! I have such a hard time finding stuff that is free of corn. 😮 😢 its in everything!
Good work and congratulations 🎉
Does the clinic you work at do video consults?
CRAZY QUESTION: does anyone have a sensitivity to fluoride? I’m completely serious and not a tinfoil hat person. I’m waiting for a diagnosis but I also have an extreme fluoride sensitivity that makes all the surfaces of my mouth hurt and creates pain & inflammation in my joints. Eliminate fluoride and everything subsides. I’m wondering if there’s any relationship between the 2. Brand New to all of this so forgive the lack of context in relation to the video. Any responses would be appreciated.
Did you have considered GENE EDITING for EDS ?
You are such a great guide for us. 😇😇thanking you a lot.
I was into sports till my teens. Now any more in my early 20s , i get so many injuries and tears. I want to play sports so badly 😅 Does severity also vary from people to people in same family. My father and grandfather never had any major muscle / ligament injuries and not chronic pain like me. And can I still exercise and gain muscle mass ?? Many places it says exercise/ and sports must be avoided. I saw your exercise video. I do walk but no sports or gym
I have heds and MVP with regurgitation. Im kind of depressed bc I thought it'd be higher than 7.5
Do VEDS patients tend to have a higher tendency for compression conditions like Nutcrakers or SMAC. Or do you see bowel ruptures in these patients as well?
What would a good test be to look for dilation? Is this something that should be repeated, and if so how often?
Hi, I just found your channel and I absolutely love it. It’s really helped me come to terms with having HEds, I really hope you see this because I really cannot find any information on plastic surgery and EDS and whether people that have this condition can get plastic surgery as I have had breast augmentation and my implants have ruptured and now I have to get a breast reconstruction and my plastic surgeon hasn’t done any surgery on people with EDS I’m just really scared and I want to know is it advisable or do most people not get plastic surgery because of the way to skin Heals.
I suffer from cfs and fibromyalgia which snri is better for energy and adrenaline and dopamine milnacipran or duloxetine?
Kinda random question, is there a relation between Loeys-Dietz and other connective tissue disorders? Or do you think that vascular EDS is as similar to hEDS as Loeys-Dietz is?
Hey izzy i am double jointed like you and i have some skills i want to contact with you
Hey which eds type do you have?
R u ok?
I have so many issues but my pain doc who is a retired neurosurgeon told me I had EDS pots gastroparesis among many other things plus both my kidneys are only functioning at 40%. I have high blood pressure bulging disc. The list goes on live in Florida can’t find a doctor worth of shit therefore I don’t go to any doctors nor am I treated for anything other than my high blood pressure and my thyroid. I do not trust doctors I think they think I’m crazy they don’t wanna do their job and help me they tell me I’m depressed and wanna put me on depression meds so I don’t go to the doctor I’m 51 and I’m struggling mentally physically and emotionally due to the lack of care. Tried to get in with the Mayo Clinic but continued to get told they have a waiting list. Sad thing is my daughter wants me to have an autopsy done when I die so that my kids and grandkids know what’s going on because a lot of stuff I have is genetic again, all the doctors and nurses here in Florida suck I have seen plenty of them and none of them are worth going to. I would rather not go to any medical facility where I am not getting the care I need and DESERVE! Willing to travel back to Alabama where I am originally from to see doctors i trust. I have pots but also have high blood pressure because of both kidneys only functioning at 40% I was always told to limit my salt intake. I’m confused on this one. Anyways if anyone sees this and have some knowledge please reply especially Izzy.
Do you also see patients with EDS as well as rheumatoid arthritis?
I do not! Even though rheumatoid arthritis is a connective tissue disorder, it’s not a gene to genetic connectice tissue disorder so it’s not something I see
I actually thought that I had vascular EDS when I first got tested because aneurysms run in my mother side which is where I got the EDS. My grandfather died at 40 with the b Brain aneurysm I had an aunt that died in her 30s of a brain aneurysm I had another aunt that died of an aortic aneurysm in her 30s I have an aunt who has an aneurysm in her carotid artery that has been clipped, my biological mother had three brain aneurysms that were repaired. At the time I got tested that was the only one that they could test through genetics in the blood. Thank goodness I do not have that I just have the hyper mobility EDS
Thankyou, trying to figure this out. It came on so quickly, seems to be getting worse joint pains everything clicking popping tearing just abywar ago i was long distance running and gym now walking or standing long hurts. Weird stuff at night too. Was told HSD and Willis ekbom (rls)