New Future Research And Correction For The Living With Eds!

[diamondcut]

Hi everyone

Thought i would share this bit of information, as i have just got back from a consultation with my gastro/nuero in London and have some good news to tell you for the future if you have EDS.

So i was told. Prof Aziz and Mathias have just come back from presenting a clinical based thesis of 1000 people with EDS and health problems they encounter and how they have accumulated enough evidence in the medical world to prove that EDS causes so many other health problems or conditions like POTs, Joint problems, migraines, dislocations and ruptures.

Still at this conferance in the UK there were those high up in the medical world that were trying to disprove this link between EDS and other health problems, why i do not know!!! Anyway the good news is the evidence can not be denied by other top professors anymore and now the next step is they will be applying for funding in bio genetics to actually begin to look into how to change or alter the DNA structure of our collagen to actually reverse the EDS!! So maybe we will see the day when our EDS can be fixed, and then so many of our problems that are an off shoot of this will no longer happen.

I know its going to be years but it a right step at least. I was shocked to hear that in the UK these top porf who have dedicated their lifes work to EDS/POTS/CFS have accountered such ignorance and arrogance to deny that people with EDS can be the route cause to so many illnesses that are going misdiagnosed.

When i hear more about if they do recieve this funding to move forward in the world of genetics i will let you know!

[issie]

Sounds encouraging. I just read an article on epigentics and that is the turning off of a gene that has been turned on. They are doing this in regards to cancer now ----so why not with EDS. This science is emerging in a very positive direction.

Keep us posted on what you hear.

Issie

[peregrine]

Neat stuff! My only concern with hypermobility/EDS issues is how correctable they are in an adult - once the collagen is produced, it's pretty much inert tissue, so it's not clear that fixing collagen production or the collagen genes themselves would improve things for someone whose collagen has already been formed, although it would help for things like scar tissue. But for kids, babies, etc - that would definitely be a neat advance! I still can't believe folks are trying to ignore the connections between these different illnesses - it's so obvious after a while, but some docs seem to only focus on one part of the body and pretend that it doesn't affect anything else. Silly.