I love her , she's the only dr that believed me and showed me what was wrong with me . she's so compassionate and patient . I am blessed to have met her and receive care from her .
She is my hero. I am greatful to be able to see her. She gave me my diagnosis of EDS after my whole life of being sick. I bawled just bawled because being told I was faking it My whole life. Finally getting a diagnosis has saved my life.
Thank you so much for sharing. I am so glad you journey has been validated and that Dr. Guggenheim came into your life. I know this is a very difficult road. We need more practitioners to learn about EDS and Dysautonomia so the future is different for those that follow.
Dr. Guggenheim is AMAZING! I was blessed to be one of her last "new patients" before her referral list was closed. Thank you for doing this video with her. She has tremendous knowledge and the heart to want to make a difference. She's truly amazing.
I know she doesn't wanna claim "expertise" but she's definitely got the 10,000 hours in to make her a "master" 💗 I'd love to be able to dig through her brain file cabinet.
my husband was told he has EDS today after years of being told they couldn't find anything wrong with him. He was tearing up listening to this and hearing his experience described so well.
Thank you for sharing this! I just WISH I could get in to see her 🥺 I’m a hot potato✋🏻 It is so refreshing just to listen to you both! Oh my goodness - I am tearing up with her magic school bus analogy🚌❗️
As a trans person who now has a diagnosis of POTS, is halfway to a diagnosis of MCAS, and is still struggling to get an EDS diagnosis (or whatever else it is!) at age 30 as I watch my health get worse with so many things unanswered, this made me really emotional and was also so helpful to hear. Alena's vision of EDS centers is incredible!! Would love to help contribute to that happening someday. I wish Alena was able to see new patients as there is no one else in the Portland/Vancouver, WA area who seems to know how to treat us. I hope one day we can get support and feel less powerless when there are no available providers who understand our bodies.
I wish I could see her. my Dr has tried a few times to get me in to see her over the years. My Dr says she does not understand my issues and wants Dr G to see me. Her wait list is now 7 years long. I wish we had more people around here :(
I was diagnosed with EDS at Doernbeher too. I wasn’t even told about the diagnosis. I know there are Facebook EDS groups, and I believe a Oregon specific group. If you join the group there are lists of doctors for EDS and related issues, and many helpful people out there.
OMG! I have intestinal adhesions 3 years in a row to ER for emergency surgery do to the adhesions, not enough small intestines to do anything now WHEN it happens again. 😢
I am taking the course and it seems geared toward health care providers. But why not ask her? Also check out all the courses on Dysautonomia International's website
My son is 27 and is really suffering from EDS, He is so tired all the time sleeps 15 to 20 hours, is really hypermobile, his skin separates, has enlarged aorta, IBS , huge stretch marks , even tho he is very thin. has lost his hair. and can not find a Doctor that knows anything about EDS , Dr G 's waiting list is long. Iam worried and scared for him, He has tried to have a colonoscopy but could not be done because his skin is so thin the DR was afraid it would punch thur . He is stressed out. Iam at my wits end. I need to find a Doctor for him, I don't care if we have to leave the state of Oregon. I wish I could find help, He is the kindest person I have ever known. I love him so much ! I wish he could see this Doctor so bad I would pay anything
There is an outstanding PT dr here in Northern CO who has Eds and diagnoses Eds. She works with several drs to help with various issues. I'm currently trying to solve back and chest pain etc. Long road but am So lucky to have this little constellation of provider's that actually believes and knows about at least some of the issues involved (and isn't afraid to learn new things from me via talks such as this).
Laurie has any medical professional checked your son for Marfan or Loeys-Dietz Syndrome? The enlarged aorta is more of a sign of those connective tissue disorders. In the case of Loeys-Dietz some professionals don't think of it because it was found so recently.
@@Smile10XEveryday NO Thank you so much for answering me. I'll have to look those up. I worry so much for him. He is always tired, he takes vitamins, eats healthy, Its so hard to get him to a doc that knows anything about these conditions , A couple times when I have taken him in the past the Doc was so rude , told him to drink more water, he got so turned off and embarrassed by that its really hard to get him back into the doc office , Your very kind to write me Thank you VERY MUCH Laurie
@@lauriepanzicabeal7566 yes it is quite hard to find good care. The various online support groups are a reasonable way to obtain leads to informed care.. You may have to learn about Heritable connective tissue disorders in general and then sort out which of those he might be. A geneticist would help. With the aortic issues he should be followed by a cardiologist. The literature rarely mentions that the upper cervical spine can be a significant source of problems too. He is fortunate that his Mom already recognizes that there are issues. Children with Moms like you are already in a better place. Best to you both.
I love her , she's the only dr that believed me and showed me what was wrong with me . she's so compassionate and patient . I am blessed to have met her and receive care from her .
She is my hero. I am greatful to be able to see her. She gave me my diagnosis of EDS after my whole life of being sick. I bawled just bawled because being told I was faking it My whole life. Finally getting a diagnosis has saved my life.
Thank you so much for sharing. I am so glad you journey has been validated and that Dr. Guggenheim came into your life. I know this is a very difficult road. We need more practitioners to learn about EDS and Dysautonomia so the future is different for those that follow.
Dr. Guggenheim is AMAZING! I was blessed to be one of her last "new patients" before her referral list was closed.
Thank you for doing this video with her. She has tremendous knowledge and the heart to want to make a difference. She's truly amazing.
I know she doesn't wanna claim "expertise" but she's definitely got the 10,000 hours in to make her a "master" 💗 I'd love to be able to dig through her brain file cabinet.
Iam in Tears right now listening to this ,
I am sorry you are in tears but hopefully they are also mixed with feeling "heard" as strange as that might sound coming from a podcast.
my husband was told he has EDS today after years of being told they couldn't find anything wrong with him. He was tearing up listening to this and hearing his experience described so well.
I'm so close to her and so bummed I can't see her. This is great, thanks for doing it. Going to share with my doc and fb
great. please share the most updated version ua-cam.com/video/I3csN08Uv0k/v-deo.html
Thank you for sharing this! I just WISH I could get in to see her 🥺 I’m a hot potato✋🏻 It is so refreshing just to listen to you both!
Oh my goodness - I am tearing up with her magic school bus analogy🚌❗️
Thank you!. Let me know if I can help find you a liked minded provider
@@adamrindend1705 yes Dr. Rinde thank you so much. I just looked you up. Are you accepting new patients?
@@iheartyeshua please send an email through my website. We can discuss. Thank you.
@@adamrindend1705 perfect, thank you doc.
That was quite reassuring about the vascular subtype… thank you :)
As a trans person who now has a diagnosis of POTS, is halfway to a diagnosis of MCAS, and is still struggling to get an EDS diagnosis (or whatever else it is!) at age 30 as I watch my health get worse with so many things unanswered, this made me really emotional and was also so helpful to hear. Alena's vision of EDS centers is incredible!! Would love to help contribute to that happening someday. I wish Alena was able to see new patients as there is no one else in the Portland/Vancouver, WA area who seems to know how to treat us. I hope one day we can get support and feel less powerless when there are no available providers who understand our bodies.
Thanks for your heartfelt response Beckett. Message me at my clinic perhaps I can find someone to help .
Where arw the links to the course for providers? Patients should send their PCP's this information.
I wish I could see her. my Dr has tried a few times to get me in to see her over the years. My Dr says she does not understand my issues and wants Dr G to see me. Her wait list is now 7 years long. I wish we had more people around here :(
MY son got diagnosed at Doernbecher Hospital as a child. BUT no one knew what to do from there. If anyone has any suggestions please let me know
I was diagnosed with EDS at Doernbeher too. I wasn’t even told about the diagnosis. I know there are Facebook EDS groups, and I believe a Oregon specific group. If you join the group there are lists of doctors for EDS and related issues, and many helpful people out there.
OMG! I have intestinal adhesions 3 years in a row to ER for emergency surgery do to the adhesions, not enough small intestines to do anything now WHEN it happens again. 😢
Is the course open to all or just practitioners? Would love more info if anything is available to patients.
I am taking the course and it seems geared toward health care providers. But why not ask her? Also check out all the courses on Dysautonomia International's website
My son is 27 and is really suffering from EDS, He is so tired all the time sleeps 15 to 20 hours, is really hypermobile, his skin separates, has enlarged aorta, IBS , huge stretch marks , even tho he is very thin. has lost his hair. and can not find a Doctor that knows anything about EDS , Dr G 's waiting list is long. Iam worried and scared for him, He has tried to have a colonoscopy but could not be done because his skin is so thin the DR was afraid it would punch thur . He is stressed out. Iam at my wits end. I need to find a Doctor for him, I don't care if we have to leave the state of Oregon. I wish I could find help, He is the kindest person I have ever known. I love him so much ! I wish he could see this Doctor so bad I would pay anything
There is an outstanding PT dr here in Northern CO who has Eds and diagnoses Eds. She works with several drs to help with various issues. I'm currently trying to solve back and chest pain etc. Long road but am So lucky to have this little constellation of provider's that actually believes and knows about at least some of the issues involved (and isn't afraid to learn new things from me via talks such as this).
Laurie has any medical professional checked your son for Marfan or Loeys-Dietz Syndrome? The enlarged aorta is more of a sign of those connective tissue disorders. In the case of Loeys-Dietz some professionals don't think of it because it was found so recently.
@@Smile10XEveryday NO Thank you so much for answering me. I'll have to look those up. I worry so much for him. He is always tired, he takes vitamins, eats healthy, Its so hard to get him to a doc that knows anything about these conditions , A couple times when I have taken him in the past the Doc was so rude , told him to drink more water, he got so turned off and embarrassed by that its really hard to get him back into the doc office , Your very kind to write me Thank you VERY MUCH Laurie
@@lauriepanzicabeal7566 yes it is quite hard to find good care. The various online support groups are a reasonable way to obtain leads to informed care.. You may have to learn about Heritable connective tissue disorders in general and then sort out which of those he might be. A geneticist would help. With the aortic issues he should be followed by a cardiologist. The literature rarely mentions that the upper cervical spine can be a significant source of problems too.
He is fortunate that his Mom already recognizes that there are issues. Children with Moms like you are already in a better place. Best to you both.
This only matters if you can get insurance.