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Surviving the stigma of invisible disabilities Published: June 24, 2009  Diana Harris was diagnosed with the condition in her 40s. By Amanda Galloway Diana Harris has a lot to live for. She is a proud mother of two girls and a blossoming artist who dabbles in watercolors and oils, while creating beautiful and eclectic bird houses and wind chimes that decorate her house near Bon Air. You may notice the brace around her hand and wonder if she is recovering from one too many late nights at the office, typing away at the computer. Yet, if you look closer, a small medical alert bracelet, wrapped around her watch, keys you in to a much more serious condition. Harris, 56, has an incurable genetic condition known as Ehlers-Danlos Syndrome (EDS) that affects nearly every part of her body on a daily basis. Aside from the braces that stabilize her hand and knee, there are no symptoms that would indicate that she has a life threatening condition. Ehlers-Danlos Syndrome, which was named after the two European doctors who discovered it, is a genetic disorder caused by a defect in collagen, a protein that builds connective tissue. As a result, people with EDS are highly predisposed toward dislocations, subluxations, sprains, and fractures, Harris explained. EDS is perhaps best known for the hyper-mobility that often accompanies it, Dr. Howard Levy of John Hopkins University explained. Such symptoms are similar to those found in contortionists, and vary in the degrees to which they affect someone with EDS. Such hyper-mobility can lead to musculoskeletal complications, and in turn lead to chronic pain, Levy said. Due to the lack of public knowledge and the massive number of symptoms that accompany EDS, the condition is commonly under diagnosed or misdiagnosed. “I was not diagnosed until I was in my forties,” Harris explained. “Before that, I was told I had MS and arthritis. My family said I was a complainer, and I was worried I was a hypochondriac.” After years of frustrating visits with doctors failing to understand her symptoms, Harris did her own research and presented the idea that she had EDS to her doctor. “The doctors verified my condition and said I had Ehlers-Danlos. It was a huge relief. I finally knew I was not just a big complainer, but my problems finally had a name. But at the same time, I was diagnosed with something that had no cure. I still did not really care, because it finally had a name,” Harris said. Since then, Harris has had more than fifteen surgeries related to EDS. It affects her allergies, her skin, her teeth and eyes, and her endocrine, gastrointestinal, musculoskeletal, and neurological systems, Virginia Family Physicians confirmed. Harris stresses that due to the lack of public awareness of her condition, one of her greatest joys is finding others diagnosed with EDS. As a result, she created the Richmond-Central Virginia support group for those with EDS, which now has more than 60 members. “We’ve become almost a family because we know and understand each other so well in a way that a completely healthy person cannot understand,” she said. Despite the severity of EDS, it lacks the outward, physical symptoms that characterize other conditions, and many EDS sufferers deal with a stigma associated with other invisible disabilities. Harris’ daughter, Sara, who also has EDS, fully understands the emotional conflict that accompanies diseases with no external symptoms. While an undergraduate student at JMU, the school newspaper attacked the widespread use of handicapped parking permits by students. “My car has a handicapped tag, and yes, I walk to it,” Sara wrote in response to the article. “I do so proudly because I have endured years of physical therapy and several surgeries to maintain such mobility…I’ve gotten the looks, the rolling eyes. Perfect strangers…have asked if I feel guilty parking in handicapped spots,” she wrote. “I am not looking for pity. I am looking for respect for myself and others with invisible disabilities.” Diana Harris uses her daughter’s story not only as an example to fight against stereotypes of the invisibly disabled, but to help promote knowledge and understanding for EDS. The symbol used to represent EDS in medical journals is the zebra, Harris explained. Doctors are often taught in medical school that “when you hear hooves, think horses, not zebras.” “Well, at one time, EDS was thought to occur in one in fifty thousand births.” Harris said, “Now, it may be as common as one in fifteen hundred.” “My only hope is that by reaching out to the community, we can help to diagnose someone. Maybe a mother will realize her daughter’s flexibility is not normal. Or an adult will realize their years of suffering finally has a name,” Harris said.
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Diana Harris of Richmond, Va Sep. 30, 2009, 11:46 AM
Bjoern, thank you for the reference to the article on traveling it was a VERy helpful though it is true I most likely will never be fortunate enough to go on safari. My sister-in-law did and the pictures were incredible! I need to save up $$ and energy at this point to be able to travel at all! :) Anita of Maine Sep. 29, 2009, 02:22 PM
Thank you for doing such a wonderful article. I hope as the word about EDS spreads around more lives will be saved. I inherited the deadly form of EDS and am grateful to all those who are willing to share their EDS journey with others. Anita Bjoern of Cape town Sep. 5, 2009, 04:57 AM
In reply to SJ Rodgers comment above. You mentioned patient travel. I found a great article related to travel called safaris for the disabled. Allthough it is focused on afrian safaris for disabled people I still feel it has some good pointers which are useful for anyone with disabilities who are planning to travel. Rgds, Bjoern Barb Talbott of Richmond, VA Sep. 2, 2009, 04:04 AM
Just to throw a few other related issues out there: - Folks with EDS need to have a bone density test (DEXA). My sons and I get tested as soon as we found out we should. While my bone density’s fine, both my 20- and 16-yr-old boys have full-blown Osteoporosis. - Dysautonomias, like Postural Orthostatic Tachycardic Syndrome (POTS) see http://www.dinet.org/index.htm, are not uncommon in EDS folks, esp. teens. - “Postural Orthostatic Tachycardia Syndrome Dental Treatment Considerations” http://jada.ada.org/cgi/content/full/137/4/488 is a GREAT article that addresses both POTS and EDS and how it may affect dental treatment. This would be a wise resource to pass on to your dentist/oral surgeon. Diana’s my EDS Heroine! Diana Harris of Richmond,Va Aug. 4, 2009, 10:33 PM
PS…. please ignore the picture! I do not look like that…..although I have gained a tremendous amount of weight in the last few years because my endocrine system has shut down. Diana Harris of Richmond,Va Aug. 4, 2009, 10:31 PM
Hi Everyone! Joyce, thank you so very very much for your kind words! You are so sweet. Ithink that your words were a little bit overstated but they are appreciated never-the-less! :) Everything that Joyce said about EDS and suggested is right on target! In fact, I have been to all the doctors she mentioned, including the ones at The Chiari Institute on Long Island. Another source of good information is Dr. Howard Levy who used to work under Dr. Clair Francomano at the NIH. He is now at Johns Hopkins in Baltimore also, not far from Clair’s office. If you look under www.genereviews.com (I believe that is correct) for an article by him on EDS, hypermobility type, etc… you should be albe to find what is an excellent article. Although he states it is about hypermobility type, he also discusses Classical quite a bit and even Vascular some. It is definately an article to share with your doctors. Speaking of your doctors, sometimes the best we can hope for, unfortunately, is finding a local doctor who may not be an expert on EDS, but who does care enough to learn about it, refer you to the proper people, takes every opportunity he/she gets to read, research and learn more about it and makes sure that you gets the best help he can find for you. Thank you for reading this article. I wanted to try and spread the information, the word about EDS to a few more families—AND DOCTORS_ and to help anyone who may have either undiagosed pain-probably along with other disorders also, or may have received an incorrect diagnosis. For most people with EDS, they receive quite a few wrong ones before receiving the correct one. Often times, doctors seem to have to eliminate other things first. Sorry for rattling on so. As Joyce said, EDNF is a good site to find information and talk with others. I believe there is also a place to search for doctors there. SJ Rodgers of Oregon Jul. 22, 2009, 05:59 PM
Carol, I also live in Eugene. I agree with you that it is difficult to find knowledgeable local doctors who respect EDS and related conditions. If you would like some help, please let me know. Maybe we can trade email addresses or chat on the phone. carol Southward of eugene oegon Jul. 19, 2009, 03:13 PM
I have not been diagnosed officially, but from what i have researched, i believe i have a form of hypermobility syndrome. My sister also has fybromyalgia and many of the joint problems as i do. I would love to find a healthcare provider here in Eugene with knowledge of these conditions….tired of beeing given drugs and sent home and being pegged as a “complainer” and…. “its all in your head “..... “shes just looking for attention”. SJ Rodgers of Oregon Jul. 1, 2009, 02:48 PM
To Linda: It’s the Ehlers-Danlos National Foundation at www.ednf.org. Also I recommend that you read anything you can find by the world’s top EDS researchers: Clair Francomano, M.D., and Nazli McDonnell, M.D., Ph.D. They have done most of their work through the NIH and Johns Hopkins in Baltimore. A search at www.pubmed.com will show you abstracts from their many scientific articles. You can find Dr. Francomano at the Harvey Institute for Human Genetics at Greater Baltimore Medical Center. She sees patients privately—and is an amazing resource. If you need transportation to that area of the country, you can apply for free or lowcost flights though www.patienttravel.org. And if you are traveling with children and need lodging, you can contact the local Ronald McDonald House for assistance. One more thing: Since 13% of EDSers also have central nervous system abnormalities such as a Chiari (kee-AR-ee) Malformation, Syringomyelia (sir-ing-go-my-EEL-ya), or Tethered Spinal Cord, you may wish to check out the following website for excellent information: www.thechiariinstitute.com. Based in NY and well-respected worldwide, TCI has treated thousands of patients with this combination of conditions, including my family and me. On their website, TCI has a whole library of free patient-education video segments made by their neurosurgeons and neurologists. To get there, click on the videos tab on the main page, then when you see the video screen, click on the patient education tab to see a menu of video segments that will teach you everything you should or could know about this subject. Be prepared to take notes or to share the videos with family members who may say things like “Oh that’s me! I wish I had known this several years ago!” It’s a real eye-opener. My family has the combination of all of the above (EDS, CM, SM, TSC). We spent years and years trying to find out what was wrong. It was frustrating. Now we are doing very well with a lot of help from the folks I’ve recommended here. Good luck! And thank you again to Diana for all the wonderful work on behalf of EDSers everywhere. Linda of Chesterfield, VA Jun. 29, 2009, 06:50 PM
OMG!!! I am just going through testings and the like because my daughter’s doctor thinks she has EDS, first it was Marfan’s. After reading all about it I think I have it also. Please give me more details on your group. I’d love to be a part of it…both of us would. THANK YOU!!!! Submit Your Comments Below |
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