Ehlers-Danlos Syndrome, Classic Type
What is Ehlers-Danlos Syndrome, Classic Type?
Ehlers-Danlos Syndrome, Classic Type, is a rare genetic disorder caused by a defect in collagen synthesis.
Last updated 30 May 2021, 06:35 PM
Last updated 6 Apr 2009, 06:34 AM
6 Apr 2009, 06:30 AM
I'm still on he waiting list for surgery. No one has responded to my questions about corrective shoulder surgery. I just want to know if it's waste of time. My surgeon, Dr, Scott Mandel in hamilton, ON said that there are no guarantees that it would improve my pain & function, or how long any improvement would be. That's why I'm curious as to what other people have experienced with he surgery-the good. the bad & the ugly. So please if you've had corrective shoulder surgery write me a note telling me about the out come. I know it's different for every one but to simply have an idea would be nice, Also I'm curious to know how many people have lost their teeth early in life because of EDS. I read that it is a rare side effect of the condition. About a month ago i had to have all but 2 of my teeth taken out. The molars had all broken off & it was starting in the front so I decided now was the time to take care of it since I had the money. I'd be interested to know how many other people with EDS have had problems with their teeth. Please get back to me. Thank you :)
2 Feb 2009, 01:16 AM
I'm on the waiting list for corrective shoulder surgery & I would like to hear from others who have had this done. Did it work out? How long was the recovery period? I know that everyone heals differently but I just want a basic idea. Thanks, nancy henrech :)
Last updated 6 Apr 2009, 06:13 AM
6 Apr 2009, 06:13 AM
I have type 3 EDS & I seem to be tired all the time but i put it down to the pain wearing me out, I've never investigated it with a doctor. It would be interesting to dee if more people with EDS have chronic fatigue problems as well.
10 Feb 2009, 07:37 PM
Adenardi: Do you also have a related bleeding disorder? Fatigue had been a big challenge for me, w EDS 3, but I also had a related disorder--we haven't confirmed but it may be von Willebrand's. Iron levels were way too low and correcting that helped immensely with the fatigue. With lousy collagen, it can be hard to form clots which proves to be a big problem for many women w EDS. So you don't have to have EDS IV to land up w bleeding issues. If it is not a bleeding related fatigue, I think you will still find that there are many folk out there w EDS who do have fatigue as well as significant unexplained pain.
20 Jan 2009, 02:03 PM
Hi I have a soft type of EDS and don't feel fatigue. Are you sure it is due to EDS? J
Last updated 16 Mar 2009, 06:02 AM
16 Mar 2009, 06:02 AM
In Growth, Genetics and Hormones, positive results have been indicated with adult stem cell therapy course of action. http://www.gghjournal.com/volume21/3/pdf/ab02.pdf An alternative to the invasive course is using AFA, a natural botanical, which when delivered in a contrate form, will release 25% more adult stem cells from bone marrow which adds up to 2-5 million more cells to help you heal yourself. Maureen
| Title | Date | Link |
|---|---|---|
| Ehlers-Danlos Syndrome: Madera boy with rare disease using YouTube to raise awareness | 09/06/2018 | |
| Life for a child with a rare disease is a grueling roller coaster ride: A mother explains | 03/06/2019 | |
| I ran from my lethal diagnosis for years. Let's make this rare disease a household word. | 10/11/2020 |
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Discussion Forum
2021 EDS Cognition study recruitment
Created by eds-cognition_greg | Last updated 30 May 2021, 06:35 PM
corrective shoulder surgery
Created by supermotleycruefan | Last updated 6 Apr 2009, 06:34 AM
The not so obvious
Created by adenardi | Last updated 6 Apr 2009, 06:13 AM
Positive Course with Adult Stem Cells
Created by skinny13 | Last updated 16 Mar 2009, 06:02 AM
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