My 3 Children Have Been Diagnosed With Ehlers Danlos Syndrome Type 3

Hello my name is Karen i have 3 beautiful children. Jaykeb 9 years, Benjamin 2 Years and Melissa 11 months, Jaykeb was diagnosed with Ehlers danlos syndrome type 3 a year ago and the other two children were diagnosed a week ago.

Jaykeb has had multiple fractures and dislocations in his young life and he usually gets sprains a few times a week.  Jaykeb suffers from severe pain in his joints and swelling frequently.

 Benjamin has currently got 2 fractured toes and a broken foot as he dropped a toy on his feet.  He too suffers from severe pain in his joints and swelling, he also is always falling over.

Melissa touch wood so far has had no breaks or fractures but has had 2 dislocations and several sprains.  Melissa suffers from bad pain and joint swelling just like the boys.

I'm 29 years old and I am also a fulltime step mum to 2 girls, Jaykeb has also been diagnosed in the past with high functioning autism, dyspraxia, adhd, vonwillebrands disease multiple allergies and bowel problems.

I would like to talk to other people out there who have this condition so i can understand what my chidren are going through and how i can help them  

karenjf karenjf
26-30, F
6 Responses Feb 18, 2010

I am a 26 year old mother who has EDS I was told I had type 2 but my symptoms are closer to 3. My mother and sister also have EDS. My 5 yr old was just diagnosed she has broen an arm and sprained her ankles so many tuimes I lost count. She falls and a small fall tuns into a visit to the er for stitches which is not normal but the EDS causes her sin to be so fragile. We are both in a lot of pain all the time and currently she has been going through alot of testing to figure out whcih type she has. I now have arthritis in my hands and most of the time they are so numb I cant feel them. I thin this is a disease that most doctors and people do not know alot about so they shrug it off to be nothing or something else. I cannot find a doctor to actually believe what I am saying about the pain and because it has gotten so sever Its hard for me to work. I wish you and your children the best of luck.

I have this very same type. I have lot of family with it. I lost all of my children because I was accused of abuse. I would like to reach out to people about this.

at the age of 25 due to my eds I was having back surgery which went wrong 21 years later the doctors still offer no help in the problems we face my joints are failing my muscles are gone my skin still tears as if I were made of paper have I let this run my life no I have a son 20 yrs old he is my miracle I have worked but due to worsening of my spine and other problems im not working now. I thank god for places like this for now I know I dont feel completely alone since I have been diagnosed since I was a baby

61 years old and have # 3. (are you sure they just have # 3 with all the broken bones and not #4 or another problem) Be sure you have good cardiologist as I had to have Mitral valve replacement. They just tried to do a repair but Mitral valve is not tolorant of such repair with this condition. Now on Coumidin which no one should be on as you can no longer get MRI's and cat scans are ussually not enough. Do not rush into any heart repair, check around. Also check if any heart rate resetting problems like I had, I had neck pain and they found ruptured discs so I had to have cervical fusion. When a child I had sever muscle leg pains. Find an expert on EDS who can recommend others. I use Dr Jewett and Winston Salem NC Wake Forest hopital wjo is their genetics expert.

hi. I am one of 3 kids in my family who have grown up with eds type3. I was not diagnosed until my sister got sick and had a disc rupture in her spine at 16. she is now 21. i was 20 when that happened, am now 26, and have been living with this illness my entire life.<br />
I am always spraining and breaking bones, as do my sister and brother, and we are often in plaster. I have lived with severe kidney problems, many infections, eyesight problems, heart problems, skin rashes, have rhumatoid arthritis in every single joint, including my jaw, and suffer from chronic fatigue syndrome.<br />
Altho most often my medical tests come back unclear.<br />
It is not easy to live with this disease, but it does become normal to the sufferer...somewhat unfair at times, but there are people out there with worse problems.<br />
The best advice I can give is to say that being open about this disease is so very important - to each other, to friends, family, teachers etc<br />
- , and also to push your children, meaning don't let it become an excuse, but at the same time it is important to listen and to believe them when they feel like they need to rest, or have hurt themselves and so on.<br />
You will probably find there are a lot out there in the medical proffesion that think you are crazy or making it up, but don't give up. just move on to somebody else until you find someone to listen to you.<br />
Also, it is not your, or anyone elses fault.<br />
I hope this helps, please contact me if you want to know anything specific.

Hi Karen, I have a 2 wonderful boys Sam who is 8 and Josh who is 6. I understand how you are feeling. It has taken me 6 years to get someone to believe me that something is the matter with Josh. He was diagnosed at at 4 with Hypermobility Joint Syndrome. The Rheumatologist at that time said he would out grow it and sent us home. She did nothing for the pain he had been in for over a year, completely disregarded the digestion problem he had experienced since birth and many other numerous facts of his life. Last October I convinced Josh's new Rheumatologist to release us to Genetics for testing. WOW, what a life changer. In 9 months we found that yes he has EDS type III and an amazing turn of events, he was diagnosed with Congenital Sensory Neuropathy. It has been our neurologist that believed what i was saying. As you may know EDS is a connective tissue disease. Anytime you have a connective tissue disease it can cause a Neuropathy which in some cases is where all of the pain comes from. Key signs of a neuropathy are numbness, tingling, sharp stabs of pain, and extreme fatigue. As if loose joints isn't enough. Because it has taken so long for doctor's to believe me Josh has already lost all sense of feeling in the bottoms of his feet and finger tips. His hips and knees pop out of place he literally walks on the bones of his feet because he is so loose. His disorder also causes an autonomic neuropathy which complicates all of his organ functions. Now he is going for Sensory Processing Disorder testing because he experiences short term memory problems. I'm not telling you all of this for sympathy. I hope to encourage you. That old saying "knowledge is power" is so true. I have spent countless hours reading medical journals and I also read a book called " It's Not Just Growing Pains" by Thomas J Lehman. It is what helped me get started understanding how to research. I have learned that if I don't agree to keep pushing, someone will eventually give in. It has paid off, just last week his Rheumatologist expressed how surprised he was at all we have discovered, he couldn't have imagined because the neuropathy that Josh has is very rare. He has a new respect for my persistence. Hopefully it will make it easier for the next parent. If you have any question about something your children experience push for the answer. It's out there. Mom's know their children and it shouldn't be taken for granted.

I also have EDS 3 and 2 children on the autism spectrum (Asperger's Syndrome) we haven't actually had my kids diagnosed with EDS yet but my oldest son (12 years) has a knee that dislocates regularly and my younger one has a current diagnosis of hypotonia. They have really had no other complications so far. Of coarse the fact that they have Asperger's may be partially the reason. Unlike typical kids they don't like sports and aren't very physical period. My kids do have allergies and bowel issues and so do I. I was also diagnosed, years ago, with adhd. My oldest also has ocd. I am curious, so you have any autoimmune issues or thyroid problems? I have Hashimoto's Thyroiditis. It is an autoimmune disease where your body kills off your thyroid hormone. I was originally diagnosed with hypothyroid but they didn't do the antibody test for years because it isn't standard. Alot of the autism moms I know have some sort of autoimmune disease. Hope this helps.