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Your Name: Star Squres                                                                                                                                         Website: http://myhome.mesastate.edu/~ssquires/Ehlers-DanlosSyndrome.html               Location:Tennessee                                                                                                                                      Comments: I am glad to find that there are people willing to connect with others through technology, to spread awareness and information about EDS!                                                                                                                                           Was this site helpful to you, and how?: This site is helpful, because it shows that people are out there, that can relate to my family and what we go through. Its comforting to find support in any form.                                                               Would you be willing to do a survey structured around the disease/disorder?: YES                                                      Sept. 28, 2011 

Your Name*: Anita McGonigle
Location*: Victoria, MN
Comments: AWARENESS is everything. I think this would have helped Kim, my daughter Sommar and countless others who have died from the undiagnosed effects of VEDS. Let's all work together to bring this awareness about. I wear my EDS bracelet 24/7. If I tell 1 person about EDS from wearing the bracelet then we can hopefully save someone who remains undiagnosed.
Was this site helpful to you, and how?: yes
Would you be willing to do a survey structured around the disease/disorder?: yes
May 21, 2011 

Your Name: Niki
Website: http://myedslife.wordpress.com/
Location: Wisconsin
Comments: Lovely site. Under your doctors section please add Dr. Phillip Giampetro at the UW Madison hospital, and Dr. Elizabeth McPherson at the Marshfield Clinic, both for the state of Wisconsin. They are my Medical Geneticists and they are great.
Was this site helpful to you, and how?: All sites with good EDS info are helpful.
Would you be willing to do a survey structured around the disease/disorder?: Yes 

Your Name: Kathryn Peoples
Website:
Location: Delaware
Comments: Hi. My daughter Ashley is 24 years old and was diagnosed with EDS Classic Type. I'm looking to find support groups in this area or surrounding states. Does anyone know of any? I'd also like to promote awareness of this disease by doing fund-raisers. Perhaps a non-profit. Would like guideance please. Thank you.
Was this site helpful to you? Yes 

Your Name: Debora E Hill
Website:
Location: PA
Comments: Wendy is my cousin
My thoughts and prayers are a constant for you Wendy, London (that I have unfortunately never met), and the rest of your immediate family. Although, our family is almost entirely disconnected in some way.. our PRAYERS can never be.
God Bless, Love Debbie
Was this site helpful to you, and how?: Of course, because it helps connect people or reconnect them to others.
Would you be willing to do a survey structured around the disease/disorder?: N/A 

Your Name: Angie Thornton
Website:
Location: Oregon
Comments: I am 28 years old and was diagnosed with EDS Vascular Type 4 when I was 19 years old. I have had hundreds of surgeries and now have an Ileostomy. I two had the Elastosis Perforans Serpiginosa on my arms and behind my knees. They took biopsys and could never find out what it was. The one on my arms went away little by little every time I had to go into the hospital. When I would come out of the hopital they would be smaller. Anyway, I have stents in my neck and will have to have them put in on the other side also. I have a hard time doing most things my joints dislocate at any givin time. I have to sleep with braces on my ankles because then tend to dislocate in the middle of the night. I have been in the hospitals more than I am out of them. I can\\\'t work but don\\\'t qualify to the SS standards to get SS benifits. I have good and bay days. No one else in my family has been tested to see if they have it and what kind.
Was this site helpful to you, and how?: yes, I finaly found out what the things on my arm and behind my knees are called
Would you be willing to do a survey structured around the disease/disorder?: yes
September 3, 2009

Name: Debbie Vaughan
Website:
Location: Atlanta, Georgia
Comments: My first husband, Josh Doss, died at the age of 27 following a series of catastrophic events resulting from VEDS. At the time, we had no idea what was happening; it was only two months before his death that we met a geneticist at Emory hospital in Atlanta and learned the probable cause. He had multiple aneurysms and had a splenic artery rupture (which he survived) but never fully recovered from. He ultimately died from an abdominal aortic aneurysm eight moths after the ordeal began. Our only son, Karsten, was seven weeks old at the time. Two weeks later his diagnosis came back from the lab in Seattle with positive results; his and his father's tissue samples had identical mutations causing vascular EDS. Their bodies produce only about 10% of the necessary collagen. Our son is now 11 years old and so far, has had more "minor" issues; although his right knee has been badly injured for three years now and we're playing "musical doctors" waiting to find out what they ultimately want to do. I've been riding this emotional rollercoaster for nearly 12 years now and am fast approaching a difficult conversation with my son about the gravity of his condition. He's already asking why he needs so many specialists just to have "minor" knee surgery. He's always known about his EDS and that his dad had it too, he just hasn't known the EDS was the cause of death. He's just now old enough to start to piece it together and I am terrified. We have a great therapist who's going to coach me through it but reading posts on this website has also been a help because it reminds me that there are many, many others facing this same very difficult situation.
Was this site helpful to you, and how?: Yes; sort of explained it in comment.
Would you be willing to do a survey structured around the disease/disorder?: yes - absolutely 

Name: Rochelle DesRochers
HomePage: http://
Where are you from: Ontario, Canada
Comments: I'm so sorry to hear about the loss of your sister, but this is a lovely tribute to her and I thank you for sharing. I have a couple of things in common. I lost my brother far too young to leukemia just 5 days after he was diagnosed, so I have an understanding of 'sibling grief'. It's a special kind of pain of its own, isn't it? I also have fibromuscular dysplasia (http://fmdsa.org - my story is in the patient story section there) and am being tested for VEDS (I dissected my renal artery last year, which resulted in losing most of my kidney). Thank you for sharing all of this information and for all you are doing to help find a cure and spread awareness.
Was this site helpful to you and how? Great info, photos, and tribute to Kim. Would love to see a Canadian doc contact info there! :)
Would you be willing to do a survey structured around the disease/disorder? Yes
April 3, 2009 13:32:55 (GMT Time) 

Name: Tim Smith
HomePage: http://
Where are you from: Yanceyville ,North Carolina
Comments: Hi Wendy, I'm very sad you lost your sister Kim at such an early age.I've read or talk the too many others who has had to go through the same situation because lack of knownledge of EDS.My wife and I along with our son's wife of three weeks had to watch our son(23) bleed to death due to V/EDS.He had gone through 2 surgeries in a couple of wks,as Kim his abominal wasn't sewed up,just packed.As I was reading Kim's tribute I wander why one family as yours has too endure so much pain.I pray and hope things will get better.My wife suffers from V/EDS and also has lost a brother(26) and a father(62) due to V/EDS. God Bless
Was this site helpful to you and how? Yes -- Just connecting with others that truly understands
Would you be willing to do a survey structured around the disease/disorder?
March 17, 2009 00:37:18 (GMT Time) 

Name: Lisa-Wendy's BBFF
HomePage: http://
Where are you from: NE Alabama
Comments: I have been bestfriends with Wendy for more than 20 years. I have been their and seen nearly everything her and her family has been through and she mine. She is a remarkable woman with a wonderful husband and great kids. She and I have been through more stuff with our families over the years than anyone could ever imagine, and we still are. To finally find out what Kim may have had and what Lj may have, not to mention the rest of her family, well it has mixed blessing. I could have not asked for a better best friend ever, and I love her and miss her terribly everyday. I know Wendy has always been looking for an answer about Kim and Lj and for her to be so close to finally finding it, but what a price to pay. I will always be here, there, anywhere for Wendy and her family, my extended family in more ways than one. She has always been my rock and now I want to be her's. I love ya lady. Lisa-Your BBFF xoxoxoxoxoxoxoxo
Was this site helpful to you and how? Yes, It helps me to better understand what Lj has & Wendy and her family has to deal with.
Would you be willing to do a survey structured around the disease/disorder? N/A
January 15, 2009 20:10:14 (GMT Time)

Name: Karen Grimmer/ Wendys Sister
HomePage: http://
Where are
you from: Fort Worth, TX
Comments: Our prayers and thoughts are with you daily Wendy, in the hunt for answers and TX of EDS for Mr. London. Lv Karen
Was this site helpful to you and how? As a Reg. Dental Hygienist, Its is something to research because of Oral Manifestations from EDS
Would you be willing to do a survey structured around the disease/disorder? N/A
January 12, 2009 03:13:54 (GMT Time) 

Name: Rosalind Corbin
HomePage: http://
Where are you from: New Jersey
Comments: Hi, my name is Roz and I am 41,I have VEDS. If I can be of any help, please let me know. My case involves me having dissections and an aneurysm in my iliac artery. Other than that, I try to keep an eye on everything I do and try to stay safe. Let me know if I can be of any help.
Was this site helpful to you and how? yes
Would you be willing to do a survey structured around the disease/disorder? yes
December 12, 2008 03:48:14 (GMT Time) 

Name: LYDIA PIZARRO
HomePage: http://
Where are you from: PUETO R ICO BUT I LIVE IN PHILADELPHIA PA.NOW
Comments: I TOO SUFFER FROM EDS POSSIBLY TYPE 4, I HAVE BEEN DIAGNOSE SINCE 1981, WHEN MY SON BORN.I EXPLAIN MORE LATER
Was this site helpful to you and how? TO KNOW THAT OTHER PEOPLE HAVE THAT IS NOT ME ALONETHE PEOPLE
Would you be willing to do a survey structured around the disease/disorder?                                           December 9, 2008 02:29:30 (GMT Time)