EDS Ehlers Danlos Syndrome

[bearbrikk]

EDS, Ehlers-Danlos Syndrome is a collective name for 13 kinds of this disease. EDS is a connective tissue disorder with many symptoms, such as hypermobility of your joints, hyperflexible skin and fragility of your blood vessels.
The most common one among all 13 is HEDS, Hypermobile Ehlers-Danlos Syndrome. Most common in women.
Now, there is something called ´the Beighton score´ that indicates the generalized hypermobility of your joints. The Beighton Score is one of the important indicators of HEDS.
EDS is a syndrome that is underresearched. There is not a lot of information about it among specialists. Because of this, 99% of people with HEDS encounter specialists who give them the wrong diagnosis or call them hypochondriacs. For this 99%, it usually takes YEARS to get the right diagnosis. And so the right help.
EDS is a progressive syndrome with no cure. So you can put 2 + 2 together and know that the 99% suffer longer than they are supposed to.
There is an exact checklist for HEDS, if you have the right amount of points, you have the diagnosis.
Because of my long and many fights with specialists, I feel like I have become a doctor myself.
I am fighting for my diagnosis so I can get the right help I need. Only then I won't end up in a wheelchair at 30 years old.
This is not even half of the things you need to endure when you have EDS but it is some.
Right now I am fighting for me, for my life. Once we pass this stage, we go on to the next one.

 

[halleyscomet]

I believe I have EDS too, well HEDS to be exact. My situation is strange, as a child I was given physical therapy to help with my symptoms, I was told I was hypermobile but it was never put on my medical records. Either way, it's HEDS and is relatively mild so it isn't something that at this point in time I am willing to fight for a diagnosis of, but looking into it, it's definitely something I struggle with and it really resonates with me.

I can understand the struggle of having to fight with doctors to be taken seriously, I hope this all goes well for you.

 

[yellowjester]

I don't have EDS, but I'm all too fammiliar with the incompetence of many doctors and how they treat patients with illnesses they don't like, so you have my sympathies. Good luck with your fight!

 

[TheLastBoyOnEarth]

i have severe craniocervical instability and i've been told a lot of people with EDS develop craniocervical instability. i send you a hug. wish you luck in whatever path you choose.

 

[mckf]

i have severe craniocervical instability and i've been told a lot of people with EDS develop craniocervical instability. i send you a hug. wish you luck in whatever path you choose.

I am the same and I am fighting for a potential EDS diagnosis. I no longer want to spend the rest of my life in a broken body which is like a prison and seeing specialists which can't help at all.

 

[brokeandbroken]

EDS, Ehlers-Danlos Syndrome is a collective name for 13 kinds of this disease. EDS is a connective tissue disorder with many symptoms, such as hypermobility of your joints, hyperflexible skin and fragility of your blood vessels.
The most common one among all 13 is HEDS, Hypermobile Ehlers-Danlos Syndrome. Most common in women.
Now, there is something called ´the Beighton score´ that indicates the generalized hypermobility of your joints. The Beighton Score is one of the important indicators of HEDS.
EDS is a syndrome that is underresearched. There is not a lot of information about it among specialists. Because of this, 99% of people with HEDS encounter specialists who give them the wrong diagnosis or call them hypochondriacs. For this 99%, it usually takes YEARS to get the right diagnosis. And so the right help.
EDS is a progressive syndrome with no cure. So you can put 2 + 2 together and know that the 99% suffer longer than they are supposed to.
There is an exact checklist for HEDS, if you have the right amount of points, you have the diagnosis.
Because of my long and many fights with specialists, I feel like I have become a doctor myself.
I am fighting for my diagnosis so I can get the right help I need. Only then I won't end up in a wheelchair at 30 years old.
This is not even half of the things you need to endure when you have EDS but it is some.
Right now I am fighting for me, for my life. Once we pass this stage, we go on to the next one.

So having been in medical school I can say this disease was taught pretty early on as it is a prime example of a collagen disorder. I have met people with it as well. I know the hypermobility while looking cool can also lead to seriously painful and issues with joints as well as other parts of the body like the vascular system. I'm not entirely sure what you are looking for. One of the issues is it is genetic. There isn't really much they can do once you are born. For instance Marfan syndrome is similar. Yet outside of trying to protect the heart little can be done. So even if you get the diagnosis I am not entirely sure what you are hoping for. It actually is reasonably obvious when someone has it. Skin can be different, joints are hypermobile, etc... My apologies if doctors aren't doing their job and paying attention. Like I said from my time in medical school and the people I dealt with. Doctor's are in some cases terribly selfish and uncaring. It truly shocked me. I wish that you get the help you need.

 

[wanttodie12345]

Even with an official diagnosis doctors generally don't take one seriously. Physical therapy is the main treatment.