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Ehlers-Danlos Syndrome User Group
Diagnosing
About This Group:

This group is for members with any form of Ehlers-Danlos Syndrome.We have this group to share info and support for each other. Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue. It is this tissue that provides support to many body parts such as the skin, muscles, ligaments and organs. The fragile skin and unstable joints found in EDS are due to faulty collagen. Collagen is a protein that acts like glue in the body adding strength and elasticity to connective tissue.

Founded by somemonkey on September 22, 2009
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Diagnosing

I am 15 and my mom refuses to belive there is something wrong with me, but my doctor says i may have Ehlers Danlos although my skin is not that stretchy and i do not bleed or bruis easily at all.. The main problem is the joint problems and I also have many stoumach problems and have tendon problems.  My hips shoulder and knees are alays popping out of plaace and I can no longer run because of knee problems.. any suggestions??
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  • seriously? (25 replies):
    Ok about a month ago every single joint in my body swell...[more]
7 Comments
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620923_tn?1393294254
Is ur dr a PCP?...if so see if he can explain this to ur mom and get to see a rheumatoid dr that specializes in EDS.....I know of one in Baltimore , MD...I have no idea where u live....but that is a start.

I am sure ur dr can explain to ur mom what he feels is going on with u....and she may understand him a bit better.

I do not bleed easily, but I do bruise easy and it takes a long time to heal.

U deff need the support of ur parents...maybe ask ur mom to sit with u while u r online and she can see how this condition can affect those of us with it.

Good luck
"selma"
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1182923_tn?1279200625
There are many different kinds of EDS - not all of us have the skin, bleeding or vascular issues.

I have the hypermobile type - strictly connective joint tissue, except for my cervix which is also affected.

The best thing that you can do is get your doctor on board to sit with you and your mom and explain everything to her. Hearing it from the doctor may be all that she needs to understand that this is a very real and very painful disease.

If your mom still doesn't give you the support that you need (I'm in my mid 30's and my family still doesn't get it or seem to care - thank goodness for my husband), make sure that you reach out to others, like on this board. You definitely shouldn't be suffering alone.
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Avatar_f_tn
Try to get her to read the info at the Mayo Clinics website.
It explains the different types quite well. I have 2 types. the hypermobile and the really rare arthritic type. I can't even remember what it is called. I have two children one is 13 and lives with my ex-husband who absolutely will not believe anything is wrong with him and the other is 5. I didn't think the 5 year old had it but I recently have been doing more reading and now have no doubt. Both my sons do too. =0(
My family thought I was nuts when I first told them I had EDS. Then my mom read the info at the Mayo site and told me I didn't need to see any more drs its obvious I have it!
Best wishes to you in your quest for the understanding of this horrible disease.
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1423792_tn?1282660798
Honey, not being understood is about the most common complaint you'll hear EDSers making, lol. It *****, but it's true.

http://www.butyoudontlooksick.com is a great website with some good links and ideas for helping people understand that, even though they can't see it, there is something wrong and you're not just a hypochondriac.

http://www.ehlersdanlosnetwork.org is also fantastic. They have a lot of short videos for educating people about EDS.

Perhaps you could try explaining to her that, even though you appear relatively healthy at the moment, EDS is degenerative, so you need to do everything you can to look after your joints, now. Hypermobility weakens joints and makes them vulnerable to things like arthritis. EDS also makes us prone to osteoporosis, so calcium and vitamin D are VERY important, as is physiotherapy. That's probably the big one -- if you can do physio (many of us chronics can't), it can make a BIG difference, provided you have a physio who understands joint hypermobility. If you haven't already, it's also important to get your heart checked. I don't want to scare you, hun, but this is important and if you need to scare her to make her take this seriously, that's one way to do so.

Also, because EDS is a SYNDROME, it's a collection of varying symptoms, rather than a strictly categorised disease.

Oh! And this is another good website: http://edsaus.ning.com It's the Australian support group, so you probably can't join, but all posts are public and there's a TON of good information on there =]

Good luck xx
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620923_tn?1393294254
Hi...thanks for the info...we do have a section of info here on MedHelp called Health Pages....if u r able to create a page of info to add to what we already have so we have the info within the site that would be great!!

"selma"
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1423792_tn?1282660798
Sure, I'll go have a look =]

xx
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1427565_tn?1327433809
Hi there,

I understand your frustrations and especially with someone that is ment to understand you and believe you! I have had this from my family to friends to doctors that have said i have made it up for attention...unfortunately just because you havent got your leg in plaster for exampke people cant see it therefore presume that 'if they can't see it, it mustn't be true'. You know your pain and how you feel so listen to what your body is telling you and pace! Get your mum to go with you to the doctors and let the doctor tell her, or simply find info online and make sure she reads it. As you get older you realise that it really doesnt matter if people believe you or not, people only understand when they go through a similar pain. Hope that helps in some way, just post back if you need to know anything else ;)

Jane_pain
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