home
RSS
What is Ehlers-Danlos Syndrome?
May 28th, 2012
11:12 AM ET

What is Ehlers-Danlos Syndrome?

Gioia found out she had Ehlers-Danlos Syndrome at the age of 7. For years her parents had struggled to figure out why their daughter was so easily injured, but doctors couldn’t offer a diagnosis.

See photos of Gioia as she learns to deal with the condition

Ehlers-Danlos Syndrome is actually a group of genetic disorders that cause problems with a patient’s connective tissues, according to Dr. Salman Kirmani, an expert on EDS at the Mayo Clinic. Collagen and other proteins in the connective tissues act like glue to support your skin, bones, blood vessels and internal organs.

There are three main types of EDS – hypermobility, classical, and vascular – but many others exist. A specific diagnosis is determined by the degree of symptoms a patient experiences.

With hypermobility, patients experience extreme double-jointedness, joint dislocation and joint pain. Classical EDS adds hyperelastic (or super stretchy), fragile skin to that list. The third most common type, vascular EDS, is the most dangerous. It results in weakness in blood vessels and internal organs that can rupture at any time.

EDS can be misdiagnosed for a long time, Kirmani said. Doctors may do a genetic blood test or skin biopsy to confirm but not all of the genes that cause the various types have been identified.

EDS was discovered in the early 1900s by Dr. Edward Ehlers and Dr. Henri-Alexandre Danlos. Still, little research has been done on its prevalence. The National Institutes of Health estimate that 1 in 5,000 people have it. It affects all genders and racial backgrounds.

“It can happen as the first time, even, in any family history,” Kirmani said, but “most of the time we see a family history of milder symptoms.”

Unfortunately, there is no cure, but Kirmani recommends seeking treatment from a team who knows and understands EDS.

“Even though we have no cure, we can certainly manage the complications quite adequately,” he said.

Managing the symptoms often involves physical therapy to strengthen muscles and over-the-counter drugs for pain.

Genetic counseling is also offered to patients, as those with EDS have a 50% chance of passing the condition on to their children.

Patients with EDS may be limited by their fragile skin or bone tissue – Kirmani and his team tell patients to avoid high-risk activities - yet the majority have a normal life expectancy.

For more information visit The Ehlers-Danlos National Foundation at ednf.org


soundoff (932 Responses)
  1. RV Repair Service Near Me

    http://p-bandai.jp/access/www.yaida.com/news/quitting_cold_turkey_is_the_best_way_to_stop_smoking_study

    June 26, 2021 at 06:29 | Report abuse | Reply
  2. RV Tire Repair Near Me

    Greetings! Very helpful advice in this particular article! It is the little changes that produce the biggest changes. Thanks a lot for sharing!

    https://advisor.wmtransfer.com/SiteDetails.aspx?url=http://tamera.indiedrawingsgig.com/how-to-research-and-also-discover-the-very-best-rv-orange-county

    June 26, 2021 at 07:30 | Report abuse | Reply
  3. Gerard Gabrel

    I used to be able to find good info from your content.

    http://severeweather.wmo.int/cgi-bin/goto?where=https://internetmarketingnevada.com/

    June 26, 2021 at 08:00 | Report abuse | Reply
  4. www.pharmaceptica.com

    cheap sildenafil 50mg uk https://pharmaceptica.com/

    June 26, 2021 at 14:03 | Report abuse | Reply
  5. 1a podcast

    I really like it when folks come together and share opinions. Great site, keep it up!

    https://www.matchesfashion.com/us/affiliate?url=http://backbonehunters.com/

    June 26, 2021 at 16:27 | Report abuse | Reply
  6. casino venetian

    Tỷ Lệ Bóng ĐáTỷ Lệ Bóng Đá muon thang casinoHai trận đấu của lượt cuối mỗi bảng bắt buộc phải thi đấu cùng giờ. Kết thúc vòng bảng, đội nhất, nhì các bảng và four đội xếp thứ ba có thành tích tốt nhất sẽ giành quyền vào vòng sixteen đội.

    https://www.vnd188.bet/

    June 26, 2021 at 17:46 | Report abuse | Reply
  7. Leadership Coaching

    https://www.cretech.com/directory/click/company/MTc0?redirect_url=https://backboneleaders.com

    June 26, 2021 at 18:31 | Report abuse | Reply
  8. Management Leadership For Tomorrow

    When I initially commented I seem to have clicked the -Notify me when new comments are added- checkbox and now each time a comment is added I recieve four emails with the same comment. Perhaps there is a way you are able to remove me from that service? Thank you!

    http://www3.valueline.com/vlac/logon.aspx?lp=https://backboneleaders.com/

    June 26, 2021 at 21:42 | Report abuse | Reply
  9. Self Leadership

    http://sns.emtg.jp/gospellers/l?url=https://backboneleaders.com

    June 26, 2021 at 22:18 | Report abuse | Reply
  10. Church Leadership Podcast

    http://www.howard.edu/asp/linkcounter/resourcesondemand.asp?url=http://www.backboneleaders.com/

    June 27, 2021 at 01:38 | Report abuse | Reply
  11. National Society Of Leadership And Success Reddit

    Howdy, I believe your site could be having browser compatibility issues. When I take a look at your web site in Safari, it looks fine however when opening in IE, it has some overlapping issues. I simply wanted to provide you with a quick heads up! Besides that, fantastic blog!

    http://yamato4u.cside.com/ys4/rank.cgi?mode=link&id=1809&url=https://backboneleaders.com

    June 27, 2021 at 01:39 | Report abuse | Reply
  12. showmance podcast

    That is a good tip especially to those new to the blogosphere. Brief but very accurate informationÖ Thank you for sharing this one. A must read post!

    http://radio.cancaonova.com/iframe-loader/?t=DatingSingle:NoLongeraMystery-Rádio&ra=&url=https://www.backbonehunters.com/

    June 27, 2021 at 02:07 | Report abuse | Reply
  13. podcast equipment

    Excellent blog you've got here.. Itís difficult to find quality writing like yours these days. I really appreciate individuals like you! Take care!!

    https://store.law.com/linkredirector/default.asp?lrcat=BLOGNetwork&lrurl=https://www.www.backbonehunters.com

    June 27, 2021 at 03:16 | Report abuse | Reply
  14. johnjay and rich podcast

    Way cool! Some very valid points! I appreciate you penning this post plus the rest of the site is also very good.

    http://server.tongbu.com/tbcloud/gmzb/gmzb.aspx?appleid=699470139&from=tui_jump&source=4001&url=http://backbonehunters.com/

    June 27, 2021 at 05:11 | Report abuse | Reply
  15. Relational Leadership Model

    http://click.app4mobile-services.biz/storeLink/?url=https://backboneleaders.com

    June 27, 2021 at 06:25 | Report abuse | Reply
  16. truc tiep bong da keo nha cai

    Thông Tin, Sự Kiện Liên Quan Đến Thẳng Soccer Phái Nữ m88Đội tuyển nước Việt Nam chỉ muốn một kết quả hòa có bàn thắng nhằm lần loại hai góp mặt trên World Cup futsal. Nhưng, nhằm thực hiện được như vậy

    https://sshuebner.org/

    June 27, 2021 at 09:35 | Report abuse | Reply
  17. podcast addict

    http://yp.ocregister.com/__media__/js/netsoltrademark.php?d=backbonehunters.com

    June 27, 2021 at 11:25 | Report abuse | Reply
  18. Coachmen Van Repair Shop Near Me

    Oh my goodness! Impressive article dude! Thank you so much, However I am experiencing problems with your RSS. I donít understand the reason why I can't subscribe to it. Is there anybody else having identical RSS problems? Anyone that knows the answer will you kindly respond? Thanx!!

    http://youthleagueusa.com/__media__/js/netsoltrademark.php?d=sprintervanrepairshop.com

    June 27, 2021 at 14:51 | Report abuse | Reply
  19. Sprinter Repair Near Me

    I really like it when people come together and share thoughts. Great site, continue the good work!

    http://bartolus.org/__media__/js/netsoltrademark.php?d=ocrvmotorsports.net/

    June 27, 2021 at 15:55 | Report abuse | Reply
  20. RV Repair Shop

    http://buffalotours.be/__media__/js/netsoltrademark.php?d=www.ocrvcenter.net/

    June 27, 2021 at 17:35 | Report abuse | Reply
  21. Diesel Sprinter Engine Repair Service

    http://compsol-ar.com/__media__/js/netsoltrademark.php?d=customcampervans.com/

    June 27, 2021 at 18:23 | Report abuse | Reply
  22. RV Repair Shops Near Me Now

    https://secure.dbprimary.com/service/util/logout/CookiePolicy.action?backto=http://ocrvmotorsports.biz/

    June 27, 2021 at 19:09 | Report abuse | Reply
  23. Sprinter Repair Mechanics

    Your style is unique in comparison to other people I have read stuff from. Thank you for posting when you've got the opportunity, Guess I'll just book mark this page.

    http://flipflippen.info/__media__/js/netsoltrademark.php?d=customcampervans.com

    June 27, 2021 at 21:32 | Report abuse | Reply
  24. RV Repairs Nearby

    http://dogatemypaper.com/__media__/js/netsoltrademark.php?d=orangecountyrvrepair.com

    June 28, 2021 at 02:21 | Report abuse | Reply
  25. RV Repair Near Me

    http://www.ozgold.com/__media__/js/netsoltrademark.php?d=ocrvluxurycoaches.com

    June 28, 2021 at 03:19 | Report abuse | Reply
  26. Nearest RV Repair

    http://preorder.easyshop.my/turn.asp?ad_id=309&link=https://ocrvandtrucks.com/

    June 28, 2021 at 09:18 | Report abuse | Reply
  27. Nearby RV Repair

    http://hobowars.com/game/linker.php?url=www.ocrvcenter.com/

    June 28, 2021 at 10:38 | Report abuse | Reply
  28. Sprinter Repair Shop Near Me

    After I originally commented I seem to have clicked on the -Notify me when new comments are added- checkbox and now each time a comment is added I receive 4 emails with the exact same comment. There has to be a way you can remove me from that service? Kudos!

    http://library.sust.edu/cgi-bin/koha/tracklinks.pl?biblionumber=32573&uri=https://ocrvcenter.com

    June 28, 2021 at 10:41 | Report abuse | Reply
  29. RV Repair Shops Nearby

    I truly love your blog.. Great colors & theme. Did you develop this site yourself? Please reply back as Iím wanting to create my own personal website and would love to find out where you got this from or what the theme is called. Cheers!

    http://www.doxtop.com/__media__/js/netsoltrademark.php?d=ocrvcenter.com

    June 28, 2021 at 11:58 | Report abuse | Reply
  30. Nearby RV Repairs

    Having read this I thought it was very informative. I appreciate you taking the time and effort to put this content together. I once again find myself personally spending a lot of time both reading and leaving comments. But so what, it was still worthwhile!

    http://gomtv.com/rd?link_id=10805&code=SHARE_DREAMWIZ&send=http://ocrvcenter.com/

    June 28, 2021 at 13:01 | Report abuse | Reply
  31. RV Repair Santa Ana

    A fascinating discussion is worth comment. I do believe that you should write more about this topic, it may not be a taboo matter but usually people do not speak about these topics. To the next! All the best!!

    https://isaaa.org/kc/cropbiotechupdate/article.asp?xxIDxx=5988&xxURLxx=https://www.globaltoday.xyz/2021/06/18/post-sub0000014

    June 28, 2021 at 13:02 | Report abuse | Reply
  32. 2016 Sprinter Mirror Repair

    https://www.lesfrontaliers.lu/exit/?url=https://ocrvmotorcoachsales.com/

    June 28, 2021 at 17:10 | Report abuse | Reply
  33. RV Repair Shops Nearby

    http://www.fjsh.cy.edu.tw/modedu/netlink/hits.php?id=96&url=https://www.www.ocrvmotorsports.life/

    June 28, 2021 at 17:31 | Report abuse | Reply
  34. Camper Repairs Near Me

    I wanted to thank you for this fantastic read!! I definitely enjoyed every little bit of it. I have got you book-marked to check out new things you postÖ

    http://www.caribbean-on-line.com/cgi-bin/bannertrak.cgi?d=https://ocrv.store

    June 28, 2021 at 18:00 | Report abuse | Reply
  35. RV Repair Near Me

    http://geowww.agrocampus-ouest.fr/portails/?portail=sdb&mode=url&url=http://ocrv.org/

    June 28, 2021 at 18:05 | Report abuse | Reply
  36. RV Repair Shop Near My Location

    http://onlinebookings.johnsonscoaches.co.uk/NavigationMenu/SwitchView?Mobile=False&ReturnUrl=http://ocrv.club/

    June 28, 2021 at 18:56 | Report abuse | Reply
  37. Sprinter Tcu Repair

    An impressive share! I've just forwarded this onto a colleague who has been doing a little homework on this. And he actually bought me dinner because I found it for him... lol. So let me reword this.... Thank YOU for the meal!! But yeah, thanks for spending the time to talk about this issue here on your internet site.

    http://www.medipana.com/include/bn_ct.asp?tg_url=http://ocrv.me/&tg_idx1=L&tg_idx2=1

    June 28, 2021 at 19:00 | Report abuse | Reply
  38. Mercedes Sprinter Refrigerater Repair

    You are so cool! I don't think I've truly read something like that before. So wonderful to find another person with some unique thoughts on this subject. Really.. thank you for starting this up. This site is something that's needed on the web, someone with a little originality!

    http://clink.nifty.com/r/search/srch_other_f0/?https://ocrv.mobi/

    June 29, 2021 at 02:09 | Report abuse | Reply
  39. RV Repair Shop Near My Location

    I love it when individuals get together and share opinions. Great site, stick with it!

    http://p4trc.emv2.com/DTS?url=http://www.newrvowners.com/&emv_key=F9X7CqqshZGf8SA9MKJi8NUY54O102IMNfcStGb5lw8W0bBhOG5mpqVsje_HhdA0lliq

    June 29, 2021 at 03:17 | Report abuse | Reply
  40. Chevrolet High Top Van Repair

    I have to thank you for the efforts you have put in penning this site. I really hope to view the same high-grade content from you in the future as well. In fact, your creative writing abilities has encouraged me to get my very own site now 😉

    http://thenonist.com/index.php?URL=oc-rv.com/

    June 29, 2021 at 04:04 | Report abuse | Reply
  41. RV Repairs Near My Location

    You've made some decent points there. I checked on the net to find out more about the issue and found most people will go along with your views on this web site.

    https://fortyseven-dot-yamm-track.appspot.com/Redirect?ukey=14xTUfv7jqVwbkM19o_M5juyWJ1umNFiLoKt8AdCEyx0-554382114&key=YAMMID-27346682&link=https://www.ocrvpaintandservice.com/

    June 29, 2021 at 04:10 | Report abuse | Reply
  42. RV Repair Orange County California

    Itís nearly impossible to find well-informed people on this topic, but you seem like you know what youíre talking about! Thanks

    https://www.webstolica.ru/go.php?link=https://newportcatalina.com/

    June 29, 2021 at 05:23 | Report abuse | Reply
  43. RV Repair California

    Great blog you have got here.. Itís hard to find excellent writing like yours these days. I seriously appreciate people like you! Take care!!

    http://blog.siol.net/agregat/redirect_post/?url=https://ocrvcenter.info

    June 29, 2021 at 05:32 | Report abuse | Reply
  44. RV Repair Near Me Now

    https://drivelog.de/bitrix/rk.php/?goto=http://ocrv.biz/

    June 29, 2021 at 06:44 | Report abuse | Reply
  45. Sprinter Repair Orange County

    https://wuangus.cc/go.php?url=https://www.ocrv.info/

    June 29, 2021 at 06:46 | Report abuse | Reply
  46. Rv Windshield Replacement Shop

    You've made some decent points there. I looked on the net to learn more about the issue and found most individuals will go along with your views on this website.

    http://morimo.info/o.php?url=http://ocrvmotorsports.us/

    June 29, 2021 at 09:16 | Report abuse | Reply
  47. RV Repair Shop Near My Location

    Great web site you've got here.. Itís hard to find quality writing like yours these days. I really appreciate individuals like you! Take care!!

    https://v2.afilio.com.br/tracker.php?banid=4459803&campid=30926;2260&siteid=48458&url=https://ocrvcenter.info

    June 29, 2021 at 13:48 | Report abuse | Reply
  48. Sprinter Alignent Repair

    Everything is very open with a really clear clarification of the issues. It was definitely informative. Your website is useful. Thanks for sharing!

    http://faprender.enviodenews.com/registra_clique.php?id=TH|teste|182022|16554&url=http://ocrvcenter.com

    June 29, 2021 at 15:49 | Report abuse | Reply
  49. Authorized Sprinter Repair Facility

    I really love your blog.. Pleasant colors & theme. Did you build this website yourself? Please reply back as Iím looking to create my very own website and want to find out where you got this from or what the theme is called. Thanks!

    http://www.kuhwa.com/__media__/js/netsoltrademark.php?d=fleetservicesocrv.com

    June 29, 2021 at 17:44 | Report abuse | Reply
  50. Sprinter Repair Near Me

    I was able to find good info from your articles.

    http://www.vasp.pt/LinkClick.aspx?link=https://www.ocrv.mobi

    June 29, 2021 at 18:05 | Report abuse | Reply
1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19

Post a comment


 

CNN welcomes a lively and courteous discussion as long as you follow the Rules of Conduct set forth in our Terms of Service. Comments are not pre-screened before they post. You agree that anything you post may be used, along with your name and profile picture, in accordance with our Privacy Policy and the license you have granted pursuant to our Terms of Service.

Advertisement
About this blog

Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.