Lymphedema and Ehlers Danlos Syndrome Type 3

[mother1991]

I was just recently diagnosed with Ehlers Danlos Syndrome Type 3. It is a connective tissue disorder that is genetic. In my case it is Autosomnal dominant meaning 50/50 chance of inheriting from one parent or side of family and the same is true for my children. I have had Lymphedema and Lipodema bilateral legs since 2002 when was officially diagnosed but had many years prior to this. I am wondering if there is a possible link between Ehlers Danlos Syndrome type 3 and lymphedema maybe having it a more complicated case or having no connection but comorbid factors? If there is anyone here whom has both would like to know more and thier experience. Any info would be appreciative.

[patoco]

Hey Mother

As far as we know EDS does not actually cause lymphedema.

However, lymphedema also involves your connective tissue so my question has always been would lymphedema make EDS worse.

In my personal opinion (please remember opinion only - I am not a trained medical professional and have never had any formal training,) based on observations of the condition indicates to me that there is a very very strong possibility that indeed LE does make it worse. LE can and often does extensive damage to our connective tissues so it seems logical to assume that it would have a very negative impact.

Furthermore, we also know that EDS also can cause edema. Hence, lymphatic involvement.

Almost another one of those chicken and/or egg situations.

There really is a serious need for some research into this so that we as LE patients can get more definitive answer.

Anyway, just my opinion. I do hope it at least can help provide some answers and/or help you formulate an answer.

Kind regards,

Pat