Fraser Henderson Neurological Manifestations of Hereditary Hypermobility Connective Tissue Disorders

Presented at the 2016 Annual ILC Ehlers Danlos Conference
Our mission at The ILC Foundation is to help individuals overcome the challenges of living with Ehlers-Danlos Syndromes and other chronic pain diseases through knowledge sharing resources, awareness, education, peer support, and research to find cures.

[@missjessy7474]

This was absolutely the most informative video on EDS and how connective tissues disorders manifest neurologically. As an EDS patient my primary throws me around from one specialist to another (juggling) trying to find what’s wrong and how to NOT manage it. The constant and debilitating symptoms are relentless and have ultimately taken over my life. If only one of my doctors knew any of this I’d maybe have a “normal” life again. Thank you again for informing us and spreading awareness to other doctors.

[@florabraswell-nm1re]

Same problem, doctors do not know how to treat EDS Patients,,l am 76 soon , Surgeries are a big risk, and what to do about all the pain , l have been bouncing around like a rubber ball and still no one is helping me

[@florabraswell-nm1re]

I was told from a Nerve conduction test, l have peripheral neuropathy from my type 2 diabetes,plus severe carpal tunnel syndrome in both hands from an EMG l have a pinched nerve in the Lumbar spine, plus a curved spine in the lumbar spine, they plus l had a benign tumor removed years ago in my neck which l am sure l am having some type of problem from that surgery! I am in severe pain every where , it’s so bad that l feel l have every autoimmune condition there is , l wake up with flu like symptoms l have gastrointestinal symptoms, my hearing is lessened, my eye sight is failing , l go everyday with a hope in Prayer , my quality of life is none , l push myself to go everyday with Gods help,but l can’t continue on like this , l think sometimes that Doctors hate me because l have a complex condition 😢 Please Pray that l find a good Doctor like Dr, Henderson thank you 🙏 l will Also Prayer for you 🙏💜

[@Cathy-ux9xd]

Wow. Wish we had doctors with even a fraction of his knowledge here in Maine. I’m on my own as an eds patient and it’s very scary. 🦓 ❤️‍🩹

[@kata6205]

Me too. I want to move to MA

[@ssgg23]

@@kata6205not really any easy to access experts on this kind of stuff in MA either

[@crystalgilliam3006]

We have an "EDS SPECIALIST" here in Ohio and they still don't seem to want to take anything seriously

[@aspenenglish4976]

I wonder who was the one who was dissatisfied and why? I know every EDS patient in here is looking for answers. Please be careful with surgeries, meds and false cures. Don’t lose hope. There is help out there.

[@andream8176]

Dr. Henderson is my angel here on Earth 🦓

[@lissymoz959]

This was an awesome presentation, very helpful. Thank you

[@mandichism2347]

I just broke into tears I've done all this but no hospitals or even hint I was being realistic..untill just recently..and I was directed to talk to other and supportive therapy

[@aspenenglish4976]

I’m so sorry. Been there and done that with my daughter and myself. I hope and pray you find physicians that will help you through this journey. God bless.❤️ 🦓.

[@theresageiger584]

I wish I had known

[@vrindersingh1495]

My MRV clearly shows that my right internal jugular vein is completely compressed by the C1 vertebrae but the doctors are not acknowledging it and they just seem to think it’s nothing to be concerned about . I have severe neurological symptoms and I fail to understand why compression of the largest vein coming out of the brain is not taken seriously. Can anyone offer any advice please.

[@vrindersingh1495]

Hi there thanks for the reply . Yes it seems it will be a big struggle to get resolve for this . I wish you all the best . Thanks

[@hejhhopp]

@@southern842 hi Maury, could you please share the name of the numerology clinic in Norway? I am suffering from similar symptoms. Thank you in advance!

[@hejhhopp]

@@southern842 Thanks a lot for the reply! Looks like the guy in charge is going to medical school just recently but still offering appointments by Skype, which is good. If I may ask you, what was the treatment plan made in your case, and do you feeel that it has been effective?

[@hejhhopp]

@@southern842 I am happy to hear that your symptoms have been reduced, and I am sorry to hear about what you have had to experience. It is, in a way, comforting to know that we are not alone in experiencing a health care system that fails us. Your story gives me some hope that there are health care professionals that understand neck-related issues. I will definitely get in contact with Kjetil, I feel I do not have anything to lose at this point. Thank you for sharing your story with a stranger.

[@casar6891]

Same

[@florabraswell-nm1re]

Can someone recommend a good Neurosurgeon or neurologist in the Jax Florida area?

[@angelasanchez4413]

I have mixed connective tissue disease and Pulmonary arterial Hypertension. I keep getting extremely dizzy and i think it has something to do with my cervical fusion that has not healed properly. How in the world can i get my vascular surgeon to listen to me?? My carotid doplar study was right at 50% occlusion so it is still "normal...."

[@Hansen23900]

Where does this doctor work? USA? If so where?

[@sandysmeenk9366]

Hello Ty, Dr. Henderson works in Maryland, USA. You can find him at the Metropolitan Neurosurgery Group.

[@theresageiger584]

Nobody helped

[@aspenenglish4976]

I’m so sorry. We went through this for years and were told we were crazy. I hope you can find help.