Ehlers-Danlos Syndrome Support Group

I am 74 years old and had my first surgery at 26 when a diverticula ruptured. Lots of fun. Spent 3 wks in hospital. Since then I have had 43 various surgeries. When they take me in to the operating room, I ask God to take care of me and He always has. I also asked him to preserve my hands and take my legs and feet if necessary. I am a painter and crafts person and I would have a hard time without my hands. You just have to keep on trying. Sometimes it is hard, but working at it is the only way to get above it. The hardest part is to watch my kids and grandkids and brother and sister fight the same thing and know how they feel. Hope this helps some. Just keep on trying. Love, MarilynnRD

I forgot to tell you that I keep a record with dates and times when nasty things happen along with the doctor's name and comments. I have a large file that I keep in the car for traveling and when they see all the problems, doctors will believe. Hope this helps. MarilynnRD

Thanks MArilynn, I appreciate the support. I do tell them that I have MCTD that is undifferentiated (mostly because they know I have a collagen defect just don't know why...) And that has helped them take precautions that they would take for EDS IV. I guess I will have to be satisfied with that. Believe me I do plenty of praying.. Going with God is the only way to go!

hey keepingon,

sorry for my late reply, i haven't been active on the board due to complications of the eds. i have type 4 and 3, both on extreme ends. the doctors actually left me undiagnosed for type 4 till i kept getting the weirdest of infections from the tiniest of things, kept bleeding and a whole other things. my guess is the reason the have left you undiagnosed is because for type 4 you have certain characteristics, such as a slightly larger chin, had club feet as a baby, was born with a dislocated hip, crowed or over lapped teeth, high plate, an severely sensitive skin. now for me i never had club feet or a dislocated hip but when i was younger an under the op i had a cardiac arrest at 2 for no reason just that my heart was weaker then it should be for that age. so the doctors left it till my heart got worse and i kept getting infections, kept getting burned from tape or even certain badages an then i bled really badly under my skin which effected my lungs an i had no option but to go to hospital, there they finally said they can take the question mark away from the type 4, they said i had an i told them i knew as i knew my body better. but see i also have a blood disorder which the type 4 eds was covering an it never showed till recently. i suggest you keep pestering them or ask to go see a hematologist (sp?). cant promise anything but thats what i do. i am now constantly at doctors an at hospital getting everything checked to make sure there is no changes, as the doc said "your life span is 48 years or younger" so i try my best to get no with life but doctors refuse to do surgery as it can be fatal if not monitored an they not willing to risk it. also the test is expensive. perhaps that is why??? type 4 is rare but anyone with eds has to be tested for it, either way in my opinion. i've seen a mother loose her only son to it an the docs refused to test him, he was only 12 when a artery in his heart burst. so keep pestering them!

Hey Kazz, Thanks for the reply. I just recently had the disscussion again this time with my old primary physician who has always been my best option (only she is far away form where I live). We went over the reasons I wanted to be tested. My spontaneous dislocations of my shoulder and knees and ankle. My turned in ankle, small mouth crossed teeth ect. Since my neice has type 3 but not 4 she thinks it is likely I don't have 4, but I have since found out that the bowel problems that I experience, the ruptures, and hernias can also come with 3. I do have a MCTD with a collagen defect of some sort that causes my bleeding problems, and I nearly died when my small bowel resection ruptured after surgery and I nearly bled to death. But, God was good and after a few days in ICU I did get better. So now I am proactive and have my bowel checked regularily, I had my heart checked a for aortic aneurysm...I am OK there, and I tell them I am a bleeder of unknown origin and my Ca+ bottoms out in surgery. So far everyone has been very respectful and helpful, but they don't believe since I am 55, that EDS 4 is the culprit. Since all we could do is be proactive I am finally content that I have done all that can be done. If I die I told my husband to have them check, maybe it will help someone else in the future. I do think the cost is prohibitive but maybe someday genetic testing will be as common as a $12 blood sugar. Till then or until I have serious complications again I will have to wait. But knowing about EDS has helped my 12 yr old neice and my 20 yr old nephew who both tested positive and are now getting the physical therapy and supportive help they need.
People with EDS type 4 have been documented to live into their 70's , so don't fear, live long and enjoy life!

You just hang in there. I am 74 and have a good like in spite of all my troubles. I just spent 10 days in the hospital with blood clots. I can't believe it since I am a bleeder. But I lived through it and am getting better. My grandmother had this and lived to 87 so I expect more good years. The doctors are mostly just guessing about this stuff. They are learning, but have a ways to go. We can teach them things to help other people like us. They sent me a card in the mail about EDS #4 that made quite a difference at the hospital. God is good and He took care of me. Love, MarilynnRD