• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Reply To: EDS help?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › EDS help? › Reply To: EDS help?

April 26, 2012 at 10:17 pm #2060
Barbara
Participant

Hi Jamie,
I’m sorry to hear of all the problems your family have, I know it’s a constant worry, especially when you’re not getting answers.

Regarding the ‘inheritance’ issue you raise, I can only relate my experience, in that, my mother could touch her thumbs onto her arms, she also had a heart murmur and flat feet BUT she was never diagnosed with EDS. I had none of those features and have lived most of my life in a very active fashion and had no idea I had EDS until a head and neck injury triggered a boat load of symptoms (more like a war-ship than a boat!) nearly 10 years ago.

Since being diagnosed myself, I have been looking at the various health problems that my children (and grand-children) have had and I believe that most of them have undiagnosed EDS. Their issues are nowhere near as extensive as your family’s issues are but I share your concern. I thoroughly understand how EDS can remain undiagnosed, as the doctor will just treat that particular symptom you present with at the time, no-one really bothers about over bendy fingers etc, until they start getting pain in them. I think Dr D’s Theory, that EDS is grossly undiagnosed, is more than likely to be absolutely correct. So your relatives may have had it, unknowingly.

Incidentally, strange you mention hip issues at birth because my own youngest daughter had ‘asymmetric creases’ which the health visitor said may need to be investigated, as she may need a brace, luckily she didn’t, my older daughter’s hip easily dislocates too. My son has had fatigue issues since he caught pneumonia aged 4, he also never got 2 of his teeth, they just never arrived. My grandchildren seem to have issues which all could be related to EDS, vision, memory, bladder, swallowing, hypermobility, one grandson has quite a few developmental issues (speech, attention, co-ordination, etc) and a growth issue, which are currently being investigated.

I believe help is on it’s way, now Dr D’s on the case!
Regards
Barbara
(UK)

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020