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Ehlers-Danlos Syndrome User Group
Fragile Veins on Knee Cap?
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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Fragile Veins on Knee Cap?

6895345?1305041553
Hi,
I have never posted, but I have found many of the information on your group page helpful.

I have not been diagnosed Ehler-Danlos Syndrome officially, but both my GP and Rheumatologist believe that I have it (ruled out lupus & rheumatoid arthritis). I have an appointment with a connective tissue specialist, but it is not until August.

I was wondering if any of you have issues with fragile veins. The other day I was walking and had shooting pain in left knee cap. I looked down and it had a swollen quarter sized lump on my knee cap (picture attached). It was warm to touch and it hurt to bend my knee too much. I thought it could have been an allergic reaction, but neighbor thought it was a blood vessel/vein that might have ruptured/popped (don’t know what the proper terminology is). The next day the whole knee cap area was bruised (lump had gone down). This happened Friday afternoon and I still have bruise today (Tuesday morning). I do bruise easily and have them on my legs most of the time, but this time I didn’t hit it at all and I have never had it swell this way.

I was just curious if this is related to Ehler-Danlos, maybe medication (started 750mg Nabumeton 2 weeks ago & it’s been helping), or something else. I wasn’t sure if it was anything serious or if I should be on the lookout for anything else that might be more serious. The only other time I have had a vein “break” like this before was 2 weeks prior when I accidently weed whacked the top of my left foot . Thankfully I don’t have a very good weed whacker and it left mostly welts and didn’t break much skin, but it did leave a large swollen area where the blood dispersed.

I will probably call GP, but I also wanted to ask everyone’s thoughts here since my doctor is not as familiar with the Ehler-Danlos.

-LB
3 Comments
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620923_tn?1405964489


Hi...there r several types of EDS...on is vascular...and could explain the issue u had with ur vein.....the slow healing and easy to bruise is a tell tale sign of EDS  that many seem to have.
I am not sure where u live, but there r specialists out there that can help. A good Rheumatoid dr should be able to dx u, a geneticist can tell u what type u have.....

There is a good EDS dr in Baltimore, MD...if u r able to travel there....that is the only one I am familiar with at this time....I hope others add info as to who they see so we can get a Drs list going for EDS !!

   "selma"
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Thanks for the response Selma.

I did go a Rheumatologist a month or so ago, but she seemed more focused on disproving lupus than helping educate me on EDS or any other potential conditions.

The good news is I am close to Baltimore and made an appointment with Dr. Framcomano after I started reading the positive posts about her from this group (I assume that’s who you are referencing).  I have 3 months until my appointment, but I am happy that I will be able to see someone who will know some answers. Until than I am trying to manage pain and other issues with help from GP.

-LB

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620923_tn?1405964489

  Yes...it is Dr Fracamano....I am so glad u r close enuff to go!!...I hope to get there one day soon : )

And for the rheumatoid Dr...mine was trying to prove or disprove lupus when they found I had chiari and then dropped me as a patient bcuz chiari is a neuro issue....too bad they did not check me further to see I also had EDS which is a rheumatoid issue...it is all egos that get in the way with most of them.....and then u have a few really good ones....and I  would rather go to them then go back to a dr that would drop a patient so quickly....it is sad.

Good luck and do let me know how ur visit in Baltimore goes : )

   "selma"
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