Thank you so much for this video! I still haven't been officially diagnosed, but I feel like I've found my "herd" 😊. It's nice to know I'm not the only one who understands what it's like to have these health issues.
@@the_REAL_Pearl_ نرجو تبليغنا لان لدي ابنه تعاني من اهلرز دانلوس الوعائية والتمططية والاعراض صعبة للغاية للاستفادة من الابحاث والعلاجات ان وجدت . انا من فلسطين والطفلة بحاجة ماسة لفهم حالتها وايجاد العلاج المناسب .
As a Lymie with autonomic symptoms, it was wonderful to hear your stories. Particularly to hear so many people agreeing that showering is just hellish. Hearing such little things, makes me feel less alone. Thank you to the participants and organisers!
Me too Lymie 💕. Lyme is what took my symptoms to 11. Ofcourse I had so many Signs & symptoms all along in life, then suddenly everything was out of control. It's been 1.5 years since I began Lyme treatment, then got the EDS diagnosis, And just like the speakers are sharing - it's quite an emotional journey. I still have a small video playing in the back of my mind - that tomorrow I'll be able to flip that switch & go back to the same fully able Shannon. I don't want to give that up, but I have got to somehow figure out how to accept & navigate this new Shannon. I'm trying Sooooo to hard to give her the love, encouragement and support that I definitely do not receive from society, most medical professionals & even my family. God it's so lonely.
@@shannon0057 I’m so sorry to hear, Shannon! Is the lyme treatment helping your autonomic symptoms? It must be so strange to be treating the lyme, not knowing which of the symptoms are lyme, which are EDS, which are both… Or do herxes bring some clarity about that?
@@AnneloesF omg!! Yes it's very confusing!! Lol.sometimes I find myself questioning which one is driving &/or maybe I have Nothing and have lost my mind - as some of the specialists I've seen have insinuated. I really do Know the latter isnt true. I think the treatment I am getting from the LLMD/ Natropath is absolutely helping. In a nutshell, the Lyme wrecked my immune systems& further deteriorated my autonomic which was a bit wonky from the EDS I didn't know I had. I stopped getting debilitating herx reactions almost a year when I switched to my current Dr. She taught me that having a herx is Not good for a body that is already struggling. It's counter productive actually to the healing process. I think she's right. The 1st 6 months of treatment I was in bed or close to it 75%. That sort of being sick/herxing takes quite a toll.
@@shannon0057 Yes, I have also done far better once the herxing was minimised. Thank god for good lyme literate doctors, that are willing to listen to their patients! Sorry to hear that so many doctors tried to make you believe it was all in your head. I have the same experience, and it was exasperating, and made me far more ill than I needed to be. I spent the first two years in bed, but now I work 4 days a week again (and sleep on the other 3 haha), and it is doable. But the POTS is one of the most challenging to manage in day to day living, as well as in a work setting.
@@AnneloesF thank you! Thank you so much for sharing & letting me know that I am not alone. It is really quite mind boggling how the medical professionals are trained/interact/closed minded &almost cruel. Ugh. I hate thinking about it. & That there are literally hundreds of Thousands of patients/family who have been in our shoes. Ugh I am So very happy to hear That your symptoms have gotten manageable.. Working 4 days means a lot. I hope you can take it easy when you need to.& Not actually sleep the other 3. 😊. Agree, the dysautonomia is suuuuucch a drag I I really don't enjoy being on the rollercoaster. Sending you hugs.
Syanne I could relate so much to you. I am 53 and just diagnosed. It makes sense of so much physical stuff since I was like 6 that was dismissed or chalked up to mental health issues. It was validating when the geneticist said “you’re not crazy.” I don’t have support though, and losing my home because I haven’t worked in 6 years. It’s 9 years since the heart and lung issues presented. It’s overwhelming knowing all that needs to be done to move but feeling so physically unable.
Thank you all for sharing your stories! I was very intrigued about the vaccine exacerbating our POTS symptoms. I was very ill after my second vaccine and now I have been having episodes of symptomatic SVT and a lot of specialists are having trouble explaining all of my symptoms that now have since appeared. This really explains why it is is important for us all to share with each other.
Thankyou all for ur honesty and frankness pots and eds and all these assocciated conditions have changed all of our lives so much i waited 27 yrs for my diagnosis only after my 18 yr old son was diagnosed i got answers . My life would have been so different if i had known what it was .im thankful my son was diagnosed in two days but at least there r answers and questions instead of blind ignorance now .
Thank you, lovely people for sharing so clearly the challenges you have all faced and still face. There's so much I and other Zebras can relate to. The ending comments from Larry and Lara hit the nail on the head. We need to be believed. C-PTSD is real and it caught up with me nearly 30 years after my first EDS-related symptoms after becoming emotionally numb about all the medical trauma and learning to approach my medical appointments and symptoms like a business. Matter of fact and professional. Now, I hardly know how to feel, but it hurts like hell in my heart and in my body.
I took my daughter to the dermatologist for acne and he noticed some scars and asked her to do some mobility exercises. He diagnosed her with EDS. I had never heard of it and he handed me a book to read the information on it. I was devastated. I don't cry but started crying nonstop for hours. She didn't know why I was crying. She was 15. He referred me to a rheumatologist ho confirmed the diagnosis.
Thank you I needed to hear this. During covid I’ve had an extremely hard time finding medical treatment. I’m below 100lbs, I can’t keep food down, I’m starving to death I’m scared. I finally got into a Rheumatologist who didn’t ask me all medical criteria said “it’s a life altering diagnosis “ he didn’t think I need to see a geneticist because there’s “no treatment” his mind was made up before he met me in a 10 min consult.
@@jenniferbondbaker I live in Edmonton Alberta Canada. From support groups I’m quickly learning that to be diagnosed in Alberta you go to Cleveland Clinic. Well that’s if I can afford it, I can’t. Also Alberta is backlogged from covid, we’re probably the worst in Canada. 🥲
@@jenniferbondbaker هل يوجد علاج لبعض الاعراض المصاحبة EDS على الاقل لتزويد الجسم من فاقد الكولاجين وتقوية الاوعية الدموية انا من فلسطين من غزة تحديدا نرجو المساعدة
I explain it as having flu everyday of my life but the different stages from contracting it , really suffering with it to starting to improve from it , but there is no rhyme or reason how you will feel from one day to the next or from one hour to the next l
Really interesting video - it’s always great to hear other people’s experiences. I would have really liked to have heard more about Lara’s experiences post vaccine. I have hEDS, POTS and histamine sensitivity and my second Pfizer vaccine triggered my POTS symptoms to deteriorate quite dramatically for about 2 months. I also ended up with latent glandular fever which I’m sure is something to do with how my body reacted to the vaccine. I really want to hear more from other hEDS, POTS patients who had similar experiences.
@@jenniferbondbaker same! It just seems too risky and unknown. Chronically ill people/zebras already can't trust health services to risk assess and provide full care for us, so how could we take a new vaccine with no long term testing 🤔
I relate to each of you. Thank you for sharing and advocating for change and awareness in the medical field. I wanted to add that I also had POTS like flairs immediately after the vaccine, but I don't regret getting it whatsoever. I am excited to share this video with my family and friends to spread awareness and empathy.
Thank you for Sharing your problems and complications. Lara you are so great and I wish my daughter had met you before. We got to know about your society in 2020 by the genetics. There’s a lot of information you shared that relates to my Saarah. Keep up with your work I am learning to educate myself more but sad my Saarahs not here.
Was so nice hearing from young adults that are supposed to be in their career/relationship/family building prime years talk about their grief. I get so sad thinking about all the things I might not be able to do now. They all have partners though that seem to support them a lot and bring them out of their holes. It's so hard going through all of these losses single on or own. Wish you had a single person up there talking about how they manage things completely on their own. I also wanted to add I had an intense reaction to my first Pfizer vaccine within 1 min where I had vibration spasms everywhere. Even my vocal chords were vibrating and they put me in a wheelchair and made me wait for 30mins. After that my eyes kept shutting by themselves and my mouth was pulling, so I sat in my car for another hour before leaving and started to finally feel my nervous system calm down. The 2nd Pfizer shot I had no reaction. The 3rd shot was moderna and I had a headache and fever for about 24hrs, but I'd take that over involuntary body spasms any day. Interesting a lot of people had a reaction that had autonomic dysfunction.
Yes thank you all, still watching but can relate- and omg the not sweating thing- I did not realize that was one of the things, I did used to sweat when much younger, if very overheated, which was never good, but haven’t in years now!
Seeing a specialist every 3 months, that is good. In the UK you are discharged after your EDS diagnosis, and you are on your own, fighting to see other specialist.
I'm 41 now and my symptoms started at age 3 and I would scream in pain in my legs to the point I couldn't walk. After having meningitis at 7 is when things got worse. I had one doctor mention eds when I was a kid but know one did anything. I got diagnosed at age 37 and I am in the same boat I was forced to move into my grandmother's house and can't hold a full time job. All my friends left , my family is constantly trying to get rid of me. Having to do everything by myself with no help and no girl wants to be with someone who can't do much. It has killed my self esteem watching everyone have great jobs and lives and I'm stuck in hell. I am having to go through ssi is the worst thing because 5 years now and still can't get approved. The thoughts of suicide are a constant because of my life is now. But I keep pushing myself and hoping that something good will happen soon.
I have 1, 2, 4 & 6 year old children. Every day is a struggle. My husband has to pick up so much slack. Plus I have osteoarthritis in my pelvis, on top of these debilitating issues. My husband & children are still absolutely thriving, but I keep getting worse by the day.
Question for anyone-If you’re knowledgeable, what terms would you suggest I use to search in my area for a doctor who has Craniocervical instability as an area of interest? Searching for Craniocervical instability locally isn’t easily searchable using obvious search terms. Or, does anyone know of a website that contains a directory of doctors, etc?
Rich talking about high pressure makes me wonder, why german doctors do not believe me, my problems could be autonomic related. Could not take Betablockers because of asthma, had a brain hemorrhage of unknown causes, and recently was diagnosed with multipme neuroendocrine tumors (hyperparatvyroid and pancreas). I wonder, what is the undermying cause of all of it. Was diagnosed way back with benign hypermobility, and was told to do strength training. With doing this, I aquired an inflammatory muscle disease. So many things, and so many medications, that my oncologist is not happy with it, but is the wrong doctor to get behind the causes of all the health troubles I del with for almost 30 years now.
My symptoms started after shoulder surgery, then the passing out started, racing heart on standing, sweating, fatigue, stomach, oxygen levels and so on. Waiting for tilt table test but been put on Verapamil by cardiologist, anyone else on this?
I have hypogammaglobulinemia which I could have had IVIG for Syane. I bet you have that as well. It's silly involved. Get it checked if you don't know.
Thank you so very much for sharing this video. So many people think that EDS just = hypermobility. It is SO much more than that!
Thank you so much for this video! I still haven't been officially diagnosed, but I feel like I've found my "herd" 😊. It's nice to know I'm not the only one who understands what it's like to have these health issues.
Same here. I can't wait for the new hEDS genetics research results to be published. It should be coming within the next few months.
@@the_REAL_Pearl_ نرجو تبليغنا لان لدي ابنه تعاني من اهلرز دانلوس الوعائية والتمططية والاعراض صعبة للغاية للاستفادة من الابحاث والعلاجات ان وجدت .
انا من فلسطين والطفلة بحاجة ماسة لفهم حالتها وايجاد العلاج المناسب .
It’s great to hear from people who are going through the same things
As a Lymie with autonomic symptoms, it was wonderful to hear your stories. Particularly to hear so many people agreeing that showering is just hellish. Hearing such little things, makes me feel less alone. Thank you to the participants and organisers!
Me too Lymie 💕. Lyme is what took my symptoms to 11. Ofcourse I had so many Signs & symptoms all along in life, then suddenly everything was out of control.
It's been 1.5 years since I began Lyme treatment, then got the EDS diagnosis,
And just like the speakers are sharing - it's quite an emotional journey. I still have a small video playing in the back of my mind - that tomorrow I'll be able to flip that switch & go back to the same fully able Shannon.
I don't want to give that up, but I have got to somehow figure out how to accept & navigate this new Shannon. I'm trying Sooooo to hard to give her the love, encouragement and support that I definitely do not receive from society, most medical professionals & even my family. God it's so lonely.
@@shannon0057 I’m so sorry to hear, Shannon! Is the lyme treatment helping your autonomic symptoms? It must be so strange to be treating the lyme, not knowing which of the symptoms are lyme, which are EDS, which are both… Or do herxes bring some clarity about that?
@@AnneloesF omg!! Yes it's very confusing!! Lol.sometimes I find myself questioning which one is driving &/or maybe I have Nothing and have lost my mind - as some of the specialists I've seen have insinuated. I really do Know the latter isnt true.
I think the treatment I am getting from the LLMD/ Natropath is absolutely helping. In a nutshell, the Lyme wrecked my immune systems& further deteriorated my autonomic which was a bit wonky from the EDS I didn't know I had.
I stopped getting debilitating herx reactions almost a year when I switched to my current Dr. She taught me that having a herx is Not good for a body that is already struggling. It's counter productive actually to the healing process. I think she's right.
The 1st 6 months of treatment I was in bed or close to it 75%. That sort of being sick/herxing takes quite a toll.
@@shannon0057 Yes, I have also done far better once the herxing was minimised. Thank god for good lyme literate doctors, that are willing to listen to their patients! Sorry to hear that so many doctors tried to make you believe it was all in your head. I have the same experience, and it was exasperating, and made me far more ill than I needed to be. I spent the first two years in bed, but now I work 4 days a week again (and sleep on the other 3 haha), and it is doable. But the POTS is one of the most challenging to manage in day to day living, as well as in a work setting.
@@AnneloesF thank you! Thank you so much for sharing & letting me know that I am not alone. It is really quite mind boggling how the medical professionals are trained/interact/closed minded &almost cruel. Ugh. I hate thinking about it. & That there are literally hundreds of Thousands of patients/family who have been in our shoes. Ugh
I am So very happy to hear That your symptoms have gotten manageable.. Working 4 days means a lot. I hope you can take it easy when you need to.& Not actually sleep the other 3. 😊. Agree, the dysautonomia is suuuuucch a drag I
I really don't enjoy being on the rollercoaster.
Sending you hugs.
Life alerting discussion. I'm a photographer/videographer and had to give up my career. Thank you all for your transparency. 🙏❤️
Syanne I could relate so much to you. I am 53 and just diagnosed. It makes sense of so much physical stuff since I was like 6 that was dismissed or chalked up to mental health issues. It was validating when the geneticist said “you’re not crazy.” I don’t have support though, and losing my home because I haven’t worked in 6 years. It’s 9 years since the heart and lung issues presented. It’s overwhelming knowing all that needs to be done to move but feeling so physically unable.
Thank you all for sharing your stories! I was very intrigued about the vaccine exacerbating our POTS symptoms. I was very ill after my second vaccine and now I have been having episodes of symptomatic SVT and a lot of specialists are having trouble explaining all of my symptoms that now have since appeared. This really explains why it is is important for us all to share with each other.
Thankyou all for ur honesty and frankness pots and eds and all these assocciated conditions have changed all of our lives so much i waited 27 yrs for my diagnosis only after my 18 yr old son was diagnosed i got answers . My life would have been so different if i had known what it was .im thankful my son was diagnosed in two days but at least there r answers and questions instead of blind ignorance now .
Thank you, lovely people for sharing so clearly the challenges you have all faced and still face. There's so much I and other Zebras can relate to. The ending comments from Larry and Lara hit the nail on the head. We need to be believed. C-PTSD is real and it caught up with me nearly 30 years after my first EDS-related symptoms after becoming emotionally numb about all the medical trauma and learning to approach my medical appointments and symptoms like a business. Matter of fact and professional. Now, I hardly know how to feel, but it hurts like hell in my heart and in my body.
I took my daughter to the dermatologist for acne and he noticed some scars and asked her to do some mobility exercises. He diagnosed her with EDS. I had never heard of it and he handed me a book to read the information on it. I was devastated. I don't cry but started crying nonstop for hours. She didn't know why I was crying. She was 15. He referred me to a rheumatologist ho confirmed the diagnosis.
Thank you I needed to hear this. During covid I’ve had an extremely hard time finding medical treatment. I’m below 100lbs, I can’t keep food down, I’m starving to death I’m scared. I finally got into a Rheumatologist who didn’t ask me all medical criteria said “it’s a life altering diagnosis “ he didn’t think I need to see a geneticist because there’s “no treatment” his mind was made up before he met me in a 10 min consult.
This is terrible. I don't know where you live, but there are excellent EDS specialists in Rhode Island.
@@jenniferbondbaker I live in Edmonton Alberta Canada. From support groups I’m quickly learning that to be diagnosed in Alberta you go to Cleveland Clinic. Well that’s if I can afford it, I can’t. Also Alberta is backlogged from covid, we’re probably the worst in Canada. 🥲
@@zebrawarriorprincess1748 I'm so sorry. I pray you get to the right doctor/diagnosis/care soon. 🙏
@@jenniferbondbaker Thanks I will take all the prayers I can these days!
@@jenniferbondbaker هل يوجد علاج لبعض الاعراض المصاحبة EDS على الاقل لتزويد الجسم من فاقد الكولاجين وتقوية الاوعية الدموية
انا من فلسطين من غزة تحديدا نرجو المساعدة
I explain it as having flu everyday of my life but the different stages from contracting it , really suffering with it to starting to improve from it , but there is no rhyme or reason how you will feel from one day to the next or from one hour to the next l
EXACTLY. This is how I feel about it, too.
Really interesting video - it’s always great to hear other people’s experiences. I would have really liked to have heard more about Lara’s experiences post vaccine. I have hEDS, POTS and histamine sensitivity and my second Pfizer vaccine triggered my POTS symptoms to deteriorate quite dramatically for about 2 months. I also ended up with latent glandular fever which I’m sure is something to do with how my body reacted to the vaccine. I really want to hear more from other hEDS, POTS patients who had similar experiences.
This is why I have not gotten the jab.
@@jenniferbondbaker same! It just seems too risky and unknown. Chronically ill people/zebras already can't trust health services to risk assess and provide full care for us, so how could we take a new vaccine with no long term testing 🤔
I relate to each of you. Thank you for sharing and advocating for change and awareness in the medical field. I wanted to add that I also had POTS like flairs immediately after the vaccine, but I don't regret getting it whatsoever. I am excited to share this video with my family and friends to spread awareness and empathy.
That’s interesting you mention that, I’ve felt a bit off since the moderna.
Thank you for sharing your experiences!
Thank you for Sharing your problems and complications. Lara you are so great and I wish my daughter had met you before. We got to know about your society in 2020 by the genetics. There’s a lot of information you shared that relates to my Saarah. Keep up with your work I am learning to educate myself more but sad my Saarahs not here.
Was so nice hearing from young adults that are supposed to be in their career/relationship/family building prime years talk about their grief. I get so sad thinking about all the things I might not be able to do now. They all have partners though that seem to support them a lot and bring them out of their holes. It's so hard going through all of these losses single on or own. Wish you had a single person up there talking about how they manage things completely on their own.
I also wanted to add I had an intense reaction to my first Pfizer vaccine within 1 min where I had vibration spasms everywhere. Even my vocal chords were vibrating and they put me in a wheelchair and made me wait for 30mins. After that my eyes kept shutting by themselves and my mouth was pulling, so I sat in my car for another hour before leaving and started to finally feel my nervous system calm down. The 2nd Pfizer shot I had no reaction. The 3rd shot was moderna and I had a headache and fever for about 24hrs, but I'd take that over involuntary body spasms any day. Interesting a lot of people had a reaction that had autonomic dysfunction.
Thank you for sharing!
Yes thank you all, still watching but can relate- and omg the not sweating thing- I did not realize that was one of the things, I did used to sweat when much younger, if very overheated, which was never good, but haven’t in years now!
Seeing a specialist every 3 months, that is good. In the UK you are discharged after your EDS diagnosis, and you are on your own, fighting to see other specialist.
This was such a helpful conversation for me and I am sure many others!
On a different note lara bloom is such a cool name 😊
I'm 41 now and my symptoms started at age 3 and I would scream in pain in my legs to the point I couldn't walk. After having meningitis at 7 is when things got worse. I had one doctor mention eds when I was a kid but know one did anything. I got diagnosed at age 37 and I am in the same boat I was forced to move into my grandmother's house and can't hold a full time job. All my friends left , my family is constantly trying to get rid of me. Having to do everything by myself with no help and no girl wants to be with someone who can't do much. It has killed my self esteem watching everyone have great jobs and lives and I'm stuck in hell. I am having to go through ssi is the worst thing because 5 years now and still can't get approved. The thoughts of suicide are a constant because of my life is now. But I keep pushing myself and hoping that something good will happen soon.
I have 1, 2, 4 & 6 year old children. Every day is a struggle. My husband has to pick up so much slack. Plus I have osteoarthritis in my pelvis, on top of these debilitating issues. My husband & children are still absolutely thriving, but I keep getting worse by the day.
I'm located in MD and struggling to get an appointment for heds and possible lupus
I can relate to so much of this discussion.
Syanne is queen
That’s how I’ve always described the feeling too. Like having a virus all the time.
If you don't mind me asking, what medications do you guys take?
Question for anyone-If you’re knowledgeable, what terms would you suggest I use to search in my area for a doctor who has Craniocervical instability as an area of interest? Searching for Craniocervical instability locally isn’t easily searchable using obvious search terms. Or, does anyone know of a website that contains a directory of doctors, etc?
Yes the eds doctors list on the eds association page. I had to travel as well. There are only 4 in the states doing cci aai shit
Anyone: How do I find a doctor specifically for cranial instability with Dysautonomia and related disorders?
Eds website. I went v to dr patel in sc
I have eds and am experiencing great pain and swelling in the morning. Is this normal
I luv Lara - so cool -
Rich talking about high pressure makes me wonder, why german doctors do not believe me, my problems could be autonomic related. Could not take Betablockers because of asthma, had a brain hemorrhage of unknown causes, and recently was diagnosed with multipme neuroendocrine tumors (hyperparatvyroid and pancreas). I wonder, what is the undermying cause of all of it. Was diagnosed way back with benign hypermobility, and was told to do strength training. With doing this, I aquired an inflammatory muscle disease. So many things, and so many medications, that my oncologist is not happy with it, but is the wrong doctor to get behind the causes of all the health troubles I del with for almost 30 years now.
Dude Rich, same story here!
My symptoms started after shoulder surgery, then the passing out started, racing heart on standing, sweating, fatigue, stomach, oxygen levels and so on. Waiting for tilt table test but been put on Verapamil by cardiologist, anyone else on this?
No I’ve never had this prescribed only transdermal nitro patch and more salt he said !!
Yes after ankle surgery n infection . Mine started to worsen
I have hypogammaglobulinemia which I could have had IVIG for Syane. I bet you have that as well. It's silly involved. Get it checked if you don't know.
💛