Welcome and please make yourself at home. The goal of this community is to provide a place where you can share experiences, support, and information about the spectrum of rare disorders. HealthUnlocked is a online community network for patient organizations and CORD is the very latest organization to start a community.
It's simple to get started. Please just introduce yourself in the box below. The hardest part in starting a community is getting the ball rolling so any contribution whatsoever will be valuable. Remember, that sharing your experience will help many people with rare disorders as your contributions will be archived and accessible for future visitors.
So don't hold back! Just go straight ahead and post, ask a question, answer a poll and have a look around the rest of the site.
Best wishes and good luck with the community in future.
Matt
Dr Matt Jameson Evans
(Co-founder, HealthUnlocked)
Written by
matt
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my name is mrs rose murray i was diadnose with a very under active thyrode i was put on thyroxen but it has not helped me at all i cant even get to see my doctor you have to book about 2months in advance even then you might be lucky and get a locum who dose not to my medical history i have had 3 strokes i cant get passed the receptionest i think when you get to a certain age they are not interesed
I note that you have received advice from several people in the Thyroid community about getting retested. You don't mention where you are located but perhaps we can help find an endocrine specialist or clinic with nurse who might be willing to work through the issues with you.
Dear Dr Matt, have just taken part in your survey and i hope my responses are helpful moving forward. As you see i am employed in Public Health and i was also involved in LTC's, little did i know i would be diagnosed with a life changing disease just a few years later. i hope this gives me an insight into Health Services as the programme i was the national lead on was about reducing length of stay and hopefully admissions for those in West Essex suffering with COPD.
Basically your site has got me fired up about supporting others with similar LTC's as mine and would very much like to be involved in some capacity, i am starting Biologics in mid-April and very much hope for some improvement in my condition and life in general. What lessons have i learnt? mainly about independently helping myself between hospital appointments, dealing with health professionals at all levels and fighting against a system which does not react quickly to a changing and rather persistent little devil called RA that touches almost all one life.
so.....not from Canada but i found one of very very few google hits for paradoxical parasympathetic syndrome here, so I joined up. I have a million, ok, a handful of alphabet dx's, a lot of "that doesn't work that way" and "gee that's interesting"....and some "I've never seen that before"......along with chiari, eds, pots (maybe...) lots of maybe, migraine, various migraine, sensory symptoms that don't make sense....etc etc
I'm a retired Trauma Nurse Specialist who now teaches probono Utilization Review to all types of medical professionals, as I'm also a Legal Nurse Consultant.
I have multiple disorders related to a genetic disorder. And have spinal cord nerve damage from faulty titanium. My ortho surgeon reported I could no longer work for a living as I'm now disabled. I consider myself physically challenged. I can walk around my home without help but always take either my cane or rollator with me in public.
I'm still able to ride an 1100# motorcycle on two wheels, but need help getting on & off of it.
I'm willing to help with research if need be for other patients. I've been a researcher and a published author on several medical topics.
As an advocate for: Healthcare, Biker, and Disabled Nurses Rights, I know how to be heard in public. Esp in front of Legislative bodies.
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but i found one of very very few google hits for paradoxical parasympathetic syndrome here, so I joined up. I have a million, ok, a handful of alphabet dx's, a lot of "that doesn't work that way" and "gee that's interesting"....and some "I've never seen that before"......along with chiari, eds, pots (maybe...) lots of maybe, migraine, various migraine, sensory symptoms that don't make sense....etc etc